gcdd.org winter 2011 Ma k i n g a Di f f e r e n c e real homes. real careers. real learning. real influence. real supports.

Waddie Welcome Symbol of the Beloved Community. news DOJ Settlement And Justice for All... for you: Legislative agenda Issues on the Table for 2011. section winter 2011

The Georgia Council on Developmental Disabilities collaborates with Georgia’s a citizens, public and private Ma k i n g Di f f e r e n c e advocacy organizations and policy A quarterly magazine of the Georgia Council on Developmental Disabilities Volume 11, Issue 3 makers to positively influence public policies that enhance the quality of life for people with Waddie Welcome: disabilities and their families. Symbol of the Beloved Community

GCDD provides this through An inspirational story of one man’s journey home education and advocacy activities, and the citizens that made it happen ...... 8 program implementation, funding and public policy analysis and research. DOJ Settlement: And Justice for All... New settlement intends to make good on Olmstead ...... 12

Legislative Agenda Issues on the table for the 2011 legislative session...... 18 Tom Seegmueller Chairperson [email protected] Entertainment Article A look at positive portrayals of Eric E. Jacobson Executive Director people with disabilities in popular culture ...... 20 [email protected] Disability Day Preview Valerie Meadows Suber Editor-in-Chief & Don’t miss it! Register now!...... 24 Public Information Director [email protected]

2 Peachtree Street NW Features Suite 26-246 Atlanta, GA 30303-3142 departments Voice 404-657-2126 Fax 404-657-2132 GCDD Viewpoint Expert Update Toll Free 1-888-275-4233 2011 promises to be an exciting DOJ settlement is discussed.... 26 TDD 404-657-2133 year with the new Governor www.gcdd.org and DOJ Settlement...... 3 Mia’s Space Wait, who has Guest Article the special needs?...... 27 O’Neill Communications Governor Deal addresses disability community...... 4 Straight Talk Claire Barth New People First president [email protected] News Marian Jackson speaks up

DSP Certificate receives about living with a disability...... 28 Chantelle Catania national accreditation...... 5 Design & Layout Real Community Initiative Around GCDD Housing options for Brandon D Hunt GCDD welcomes new staff...... 6 individuals with disabilities...... 29 Cartoonist Perspectives Resources ...... 30 Disability community weighs in on a controversial topic...... 16 Calendar & Cartoon ...... 31

2 Ma k i n g a Di f f e r e n c e gcdd viewpoint S eegm u elle r T om E. J acobson E. Er ic We hope that you like the new look for our magazine and that you will let us know what articles you would like to see by e-mailing us at [email protected]. ga.us, subject line: Letters To The Editor.

New Year, New Initiatives gcdd viewpoint

During the last ten years, Making A Difference magazine has had numerous articles about the Olmstead Decision. As you will recall, this is the United States Supreme Court decision directed at the State of Georgia indicating that provid- How to ing services in institutions is a violation of the Americans with Disabilities Act. Many of us believed that with this decision, the State would begin closing insti- Reach Us dtutions and moving people with developmental disabilities into the community.

Instead, the State seemed to fight the decision and continued to keep people Letters to the Editor Letters should include the writer’s full name, in institutions and admit individuals on a regular basis. At the same time, orga- address, phone number, and may be edited nizations such as the Georgia Advocacy Office were identifying cases of abuse, for the purpose of ­clarity and space. neglect and even death in the institutions. Contact Our Editor and Both of these resulted in the United States Department of Justice (DOJ) taking the State of

Georgia to court to create better conditions in the institutions and to require the state to move Public Information Director: Valerie Meadows Suber people into the community. After much negotiation, the two sides settled this lawsuit. The most [email protected] important aspects of the agreement are that the State will not admit anyone into a state institution P: 404.657.2122 after July 1, 2011 and will move all people with developmental disabilities out of institutions by F: 404.657.2132 July 1, 2015. In addition, the Department of Justice realized people could not be moved into the community without quality services available to provide support. This issue of Making a Difference or: 2 Peachtree Street, NW Suite 26-246 focuses on the DOJ Settlement and what it means to the disability community. Atlanta, GA 30303-3142 We also want to celebrate 2011! The New Year marks the 40th anniversary of the Developmental Audio or Disabilities Bill of Rights and Assistance Act of 1971. GCDD is proud to be one of the 55 entities Large Print Versions: created throughout the U.S. and territories as a result of this historic legislation. And be sure to For an audio version of Making a Difference, join GCDD at the 14th Annual Disability Day at the Capitol on February 24, 2011. please contact GCDD. A large font version is available for download at www.gcdd.org. Also, beginning with this issue, Governor Nathan Deal has agreed to provide a quarterly article. We congratulate the Governor on his election and look forward to working with him on issues Subscriptions / Back Issues: important to people with developmental disabilities. Visit us at our website: www.gcdd.org or call us: 404.657.2126. You can learn more about Governor Deal and the legislature by following the Georgia General Assembly through the GCDD’s new and improved website www.gcdd.org, by subscribing to It is our policy to publish readers’ comments. Moving Forward at www.gcdd.org/join-our-mailing-lists/, and following us on Facebook (Georgia Contents do not necessarily reflect the Council on Developmental Disabilities) and Twitter (twitter.com/georgiacouncil). We hope that opinions of GCDD, the editors or state government. you will find our new tools useful in helping you find out about news and events that affect you and your family members. Magazine Sponsorship: For sponsorship opportunities contact: Kim Shapland at 770.578.9765 or Eric E. Jacobson Tom Seegmueller Executive Director, GCDD Chairperson, GCDD [email protected].

winter 2011 | gcdd.org 3 guest article

To Georgia’s Disability Community:

On election night, I stood before all of Georgia and declared in my acceptance speech, “We are going to make this state great!” As promised, my administration will aim to create o a land of opportunity and prosperity for everyone guest article lucky enough to call Georgia home. Georgia has a record of strong and vision- people with disabilities already living in the ary leadership, but each new governor has community and those leaving institutions as a chance to improve in certain areas. I feel they assimilate into their local community. strongly that we can expand opportunities and Our service system should reflect and promote boost the quality of life for Georgia’s disability the values of dignity, independence, individu- community. As governor, I’ll implement the al responsibility, choice and self-direction. recent settlement with the U.S. Department of Justice, which is a bold call for 25 specific As governor, I can assure you that my ad- action items. These include: ministration will continue to seek new and innovative ways to better support initiatives • Increasing community crisis services to that promote independence, employment and serve individuals in a mental health crisis the health and well-being of the great people without admission to a state hospital, of our state. including crisis services centers, crisis sta- bilization programs, Our work will begin in mobile crisis and As a state, we must earnest as we start mov- crisis apartments provide a stronger, more ing more and more of • Creating at least effective community- our citizens with disabil- “As governor, I can 1,000 Medicaid based infrastructure ities out of institutions assure you that my waivers to transi- to meet the individual and into their com- administration will tion all individuals needs of people munities where we need to provide appropriate continue to seek with developmental with disabilities. support services. For me, new and innovative disabilities from the state hospitals to community settings this is a continuation of ways to better support my efforts in Congress, where I worked with • Increasing crisis, respite, family and initiatives that promote my colleagues to provide enhanced support housing support services to serve independence, services for people with disabilities through individuals with developmental improved community-based services in the employment and the disabilities in community settings Medicaid program. health and well-being Our vision for people with disabilities begins of the great people As 2011 begins and my first term as governor with Community First and builds on the idea unfolds, the disability community can rest of our state.” that individuals have access to real communi- assured that it will have an advocate in the ties, real careers, real homes and real learning governor’s office. I look forward to not only experiences. As a state, we must provide a working for you, but also with you over the stronger, more effective community-based next four years. infrastructure to meet the individual needs Nathan Deal of people with disabilities. This encompasses Governor of Georgia

4 Ma k i n g a Di f f e r e n c e news

Direct Support Professional Certificate Program Receives NADSP Full Accreditation

in the News As of November, the Direct Support Certificate Program received full accredi- Abilities Expo 2010 tation from The National Alliance for Direct Support Professionals (NADSP). This is the second highest level of accreditation available and means that The Atlanta Abilities Expo was certificate holders are more marketable than their non-certified counterparts. held October 15 – October 17, 2010 at the Cobb Galleria The certificate program includes two classroom courses and two practicum, Convention Center. The mis- a total of 250 hours of training. The unique feature of the program is that sion of the show was to help the each student is paired with a learning community find solutions, gain The certificate program partner who is a person with a disability. knowledge and network with includes two classroom The students take what they are learning other individuals with disabili- courses and two in the classroom and apply it in their ties, their families, caregivers practicum, a total of 250 learning partner’s life. It is a very and healthcare professionals. hands-on curriculum that is offered hours of training. The show featured products for through the technical colleges. Over people with physical, sensory 300 direct support professionals have completed the certificate program. or developmental disabilities. Visit directsupportnetwork.com for more information. Workshops on a diverse group of topics, from finance to dat- GCDD Family Support Grant ing, travel to home modifica- GCDD plans to create a sustainable model of community-based family tion, were also offered. Special support founded on collaboration and asset-based community development, events included a wide-range which addresses the needs of unserved or underserved families with activities that were interactive, developmental disabilities and is inclusive of their non-disabled community instructive and entertaining. The partners. GCDD intends to carry out the activities in collaboration with its next Atlanta Abilities Expo will federal partners, Parent to Parent of Georgia, the Navigator Teams and the take place February 17-19, 2012 Parent Leadership Coalition, The Arc of Georgia, the trainers from the TASH at the Georgia World technical assistance team and partners from outside the disability arena. Congress Center. Visit The communities will include families from rural, culturally diverse and www.abilitiesexpo.com urban environments. For more information, contact Dottie Adams at to learn more! [email protected].

Correction: In the last edition of Making A Difference, the magazine reported in the, “Appreciation Program” article (page 12) that Senator Don “Doc” Thomas was being recognized for his work on the Nurse Practice Act. He was actually being honored upon his retirement for his many years of service in the Senate, particularly for his contributions as chairman of the Human Services Committee.

winter 2011 | gcdd.org 5 around gcdd Running LEAN, LEAN Tools but Not Necessarily Mean. 1. Standing in the Circle Observing and under- standing the real situation LEAN is not just something you do against a wall when through direct observation. you’re tired and need some support. Around GCDD, 2. Waste Analysis LEAN is a set of business principles designed to help Where is time, money, and businesses try to look at their efficiency and add value. energy being wasted? Dottie Adams, GCDD Family and Individual Supports director, says, “It’s not necessarily about 3. Fishbone Diagrams how to streamline things, but more about making the most of who and what you have, and Finding the cause setting up the environment in a way that flows.” and effect. l GCDD recently sponsored a LEAN seminar for “It’s not necessarily about 4. Five Whys representatives of the thirteen Project Search how to streamline things, Finding the root cause programs in Georgia at the Simpsonwood Con- of a problem. ference Center in Norcross. “Our two trainers but more about making the were Susie Rutkowski from Project Search most of who and what 5. Five S’s in Cincinnati, and Anne O’Bryan from Project you have, and setting up A process that results in a Search in England,” said Adams. “We spon- the environment in a well-organized workplace. sor job coach training and Susie does all the way that flows.” 6. Standard Work technical assistance training for us in Georgia.” A tool for making the best The Cincinnati Project Search program was awarded a grant to facilitate the LEAN seminars method consistent among at various locations around the country and Georgia was selected. “They taught us ten different all workers. tools that are ways to either problem solve or look at the environment you’re working within to 7. Training Matrix try and figure out the best way to do things,” said Adams. Form to use to identify standard operating procedures for employee training. The Benefit of Project Search. 8. Error Proofing A tool for improving Project Search is a program designed to people with disabilities do the jobs they’re the process to prevent transition high school kids with disabilities skillful at doing and are trained to do. That mistakes from being made into the workplace. Most of the businesses way, it doesn’t take away from people giving or greatly reducing the involved are either hospitals or other medical patient care.” possibility for error. facilities as well as one county government. GCDD has been a long-time sponsor of tech- 9. Action Plans “We’re hoping this will help teach the Project nical assistance for local areas to help replicate A tool for communicating Search staff, the job coaches and the Project Search and do it well. “We’ve progress during instructors to really look at the environment helped pay for training so that representa- implementation phase and assist in helping the businesses be more tives can go to the national Project Search of problem solving. effective and efficient,” says Adams. “It can conferences,” says Adams. Putting the LEAN also help the businesses see how hiring people principles to work will not only serve to help 10. Measurement Systems with disabilities can assist them in performing the Project Search staffs work smarter and A way to define the uses some of the jobs that clinical people are doing more efficiently, but they also bring added of data for analyzing and right now. It’s a way to use the clinical people value to the employers who hire the kids com- improving performance. more for what they are trained for and let the ing out of the Project Search programs.

6 Ma k i n g a Di f f e r e n c e He wanted to work for GCDD because of “its mission of advocating for public policies that improve and enhance the lives of people with developmental disabilities. The idea of creating local change to improve lives of individuals GCDD Welcomes New Staff and families connected with one of my pri- mary purposes in life: to serve others,” he says. GCDD is pleased to welcome its new staff members, Furthermore, “the small staff environment Anna Watson, Michael Harrison and Erin Walls. Each of them appealed to me because I have the opportunity brings his or her own skills and expertise to the GCDD team, to learn from the public policy director, public information director, and family and individu- but most importantly, they bring a passion for helping people al supports director.” with disabilities live fuller, more integrated lives. Michael holds a Bachelor of Science in Busi- ness Administration degree with a specializa- tion in Marketing. And he maintains full-time Anna as well as Partnership for Success and others,” employment with the Department of Treasury. Watson Watson says. “And Dottie Adams and I just got back from visiting schools in Moultrie.” As a new GCDD Erin Walls Planning and Policy Her long-term goal is “to unlock the waiting Atlanta native Erin Specialist and assis- list.” In her new job, she’s in a perfect position Walls is working on tant to Pat Nob- to do just that. her Masters of So- bie, Anna Watson cial Work at Georgia quickly found out Michael State University. As that the title means, Harrison part of her second “I get to take part in just about everything.” Cleveland, Ohio- year course studies, That suits her just fine. born Michael she was placed as an intern at GCDD because of her interest in Watson graduated with a Bachelor of Science Harrison is one of social policy and advocacy. in Fashion Merchandising from the University the newest mem- bers of the GCDD of Georgia in 2005 and a Master of Science Erin actually has a professional background in support family. His in Family and Consumer Sciences in 2007. the performing arts. She moved to New York official title is Real While in graduate school, Anna interned at after high school to pursue a career as a profes- Communities AmeriCorps member, and he the Office on Disability in the Department sional ballet dancer. She also worked in theatre provides volunteer part-time programmatic of Health and Human Services, Office of the and film as an actor, as well as producing a and administrative support to GCDD’s Real Secretary in Washington, D.C. “When I was couple of plays. working on my Masters, I also had the oppor- Communities Initiative. AmeriCorps is a large tunity to interview Pat,” which is how Watson organization with various branches and he A former ballet dancer, Erin was motivated to was first introduced to GCDD. works under the Georgia Personal Assistance change careers by the volunteer work she did Service Corps (GA Pas Corps). The GA Pas at Ground Zero immediately following the Watson and her husband moved to Charlotte Corps works in concert with the University of events of 9/11. Erin was able to volunteer with for a couple of years while he attended culinary Georgia’s Institute on Human Development an ad hoc group to feed and provide respite for school. She taught school, and when they and Disability. all the recovery workers at the site. moved back to Atlanta, she sought a position that would allow her to combine her interests Michael moved to the Atlanta area six years The experience impressed upon her the ability in the educational field with her passion for ago for professional growth and advancement. and generosity of people to come together to helping kids with disabilities transition into the “I have a passion for leadership, commu- help others in time of need. She says her inter- community. Watson’s twin sister has cerebral nity building, strategic planning, personal est in policy and advocacy is very much related palsy, so she has first-hand knowledge of what growth (self-love, love ethic, and self-esteem), to what motivated her as an actor, which is to programs are and are not available. social justice, public transportation, literacy, tell the story of people who may not be able to disability rights, youth empowerment, civil tell it themselves. “I’ve been part of Project Search and have rights, LGBT rights, poverty, race, culture, and already been to conferences for that program, sexuality,” he says.

winter 2011 | gcdd.org 7 Waddie Welcome: Symbol of the Beloved Community By Claire Barth

In 1999, Connect Savannah, a local newspaper, named Waddie Welcome one of the most influential people of the decade. He is called a “surprising new leader,” and is described as follows:

“At first glance Waddie Welcome looks anything but influential, beset with cerebral palsy and iapproaching nine full decades, he is mostly quiet and unassuming. But beneath the years, beneath the persona of disability, lies fierce determination, a determination that has influenced thousands across the state, the nation and the world...”

Though Welcome died in 2001 from liver cancer, his influence is still felt. His life is the crux of a new grass roots movement that began with one remarkable man fighting to live in his commu- nity but ended as a magical collaboration of individuals that came together to affect change and ultimately live better lives.

The story of how citizens came together to improve Welcome’s quality of life stops at nothing “Waddie Welcome short of inspirational. How did one man motivate so many people? Close friend and author Tom Kohler wrote, “Waddie Welcome was a kidnapper. He had a way of catching your eye with was a kidnapper. He his eyes, those fierce, intense eyes, and once he had you with his eyes, he would use that amazing had a way of catching smile, that quick laugh, to hold you.” Friend and author Susan Earl, added, “Not only was he your eye with his eyes, captivating, but Mr. Welcome made a huge contribution simply by letting people get to know those fierce, intense him. He could have easily hidden from society, but he was determined to connect with people and get noticed.” eyes, and once he had you with his eyes, he Today, Welcome’s influence continues to transcend that which he was physically capable. Since the would use that amazing publication of the book, Waddie Welcome and the Beloved Community, by Tom Kohler and Susan Earl, he has become a symbol of the beloved community. In the book, the authors cite civil rights smile, that quick laugh, leader Rev. James Lawson’s well-known definition of the beloved community, “The beloved commu- to hold you.” nity is not a utopia, but a place where the barriers between people gradually come down and where citizens make constant efforts to address even the most difficult problems of ordinary people. It is above all else an idealistic community.” And with those words, so begins the Welcome’s story.

8 Ma k i n g a Di f f e r e n c e Waddie Welcome in the mid-1980s at Savannah Health Care Nursing Home on White Bluff Road.

“The beloved community is not a utopia, but a place where the barriers between people gradually come down and where citizens make constant efforts to address even the most difficult problems of ordinary people. It is above all else an idealistic community.”

Waddie Welcome was born on July 4, 1914 to Carrie and Henry Welcome of Savannah, Georgia. He lived happily with his family for over 70 years. Before his mother died in 1974, she asked her friend, Mrs. Addie Reeves, to watch over Welcome. She never intended for him to be placed in an institution. Over the years, Reeves and Welcome’s brother, Willie Welcome, managed his care until neighbors called in Adult Protective Services. Instead of assisting Willie and Mrs. Reeves, they placed Welcome in a nursing home.

From the mid 1980s through the early 90s, Welcome lived in nursing homes in various Georgia cities. When Kohler, who was and still is the coordinator of Chatham-Savannah Citizen Advocacy, met Welcome in 1986, he was immediately captivated and began a search for the right citizen advocate for him. When asked what he looks for in an advocate, Kohler “ Mr. Welcome stands on the shoulders of says, “First and foremost, an advocate needs to possess common sense, passion and persis- the American Civil Rights movement. tence. Also, advocates should be proactive in People are always looking to connect with their communities. Successful advocates are not afraid to make a commitment and stand one another. When the barriers between by it.” Prominent Savannah attorney, Lester Johnson fit the bill. people come down, this concept comes to At the time, his friends were not sure if life. People are freed by these connections.” Welcome could speak, but they did know that he wanted out of the nursing home so that he could move back to Savannah. But he was told he was too old and too disabled to live in the community.

winter 2011 | gcdd.org 9 feature

The Carter Center preview of Waddie Welcome A Man Who Cannot Be Denied. From left: Susan Earl, Tom Kohler, Sylvia Kemp, Dotti Black, Debra Selman and young friends.

As Kohler, Johnson and a few others worked Welcome became a member of the Storytell- tirelessly to bring Welcome home, other ers. Because Welcome’s verbal skills were “It’s really simple. citizens came forward to join the effort. Susan minimal, the group had to develop creative Get a book. Invite your Earl, Beloved Community author, became one strategies to help him communicate his of the founding members of a grass roots orga- dreams and wishes. Once they knew exactly friends to your house. nization called The Storytellers, founded upon what he wanted, they set out to connect with Have each person read the principles set forth by the Highlander Folk the organizations and people who could help. a chapter. Sometimes School, where much of the strategy of the civil Disability Rights Advocate, Debra Selman, there are tears, rights movement was forged. In their monthly became the group’s organizer and Welcome’s meetings, they listened to each other’s hopes disability rights advocate and circle facilitator. sometimes laughter. and dreams while sharing food and friend- She kept the group on task and before they Encourage people to ship. The Storytellers also helped form support knew it, his team of citizen advocates included go forth and conduct systems that assisted many members who were a state representative, the president of the Sa- their own readings. living in nursing homes to move toward com- vannah Bar Association, a revered civil rights munity life. leader, a historian and a newspaper reporter. Help others hear the story for the first time.”

10 Ma k i n g a Di f f e r e n c e In 1996, in-home funding was secured, and munity have gained popularity as a way to people who may be invisible within Welcome moved in with friends. Earl writes of motivate people to be more involved with their communities.” his homecoming, “It was simple, it was quiet, other people and their communities. Susan but was radical social change.” Earl explains the book reading process, “It’s re- The movement continues to gain momentum ally simple. Get a book. Invite your friends to through readings. A combined celebration of The combination of Welcome’s gregarious your house. Have each person read a chapter. Martin Luther King’s birthday and Waddie personality and the support from prominent Welcome’s life will be held at the Children’s citizens soon began to attract the public’s Museum in Atlanta on January 17, 2011 attention. The 1996 documentary, “Waddie around noon. A public reading of Waddie Wel- Welcome: A Man Who Can’t Be Denied,” come and the Beloved Community will be part about his fight to leave nursing homes and of the festivities. By the time this magazine is reclaim his place in his community, was used distributed, the reading will already have oc- to persuade state representatives to modify curred, but visit www.waddiewelcome.com or Medicaid laws and advocate for individuals the Facebook page to see what people had to with disabilities to live in homes in their com- say about it. munities. It also won the 1998 TASH (The Association of People with Severe Handicaps) Kohler and Earl are encouraging everyone who Award and three other distinguished awards. can to join the grassroots movement to work Timothy Daiss, Connect Savannah reporter, towards creating and sustaining communi- said, “By pushing his own agenda, he is now ties. Kohler says making a difference “is really pushing public policy. By pushing policy, he is about looking close to home. Ask yourself making an impact for future generations.” if you know anyone in your church, school Mr. Welcome with Debra Selman, or social network that needs help. You won’t In 2000, at age 84 he was diagnosed with liver facilitator of Mr. Welcome’s circle. have to look very far. Approach them and ask cancer. Born on the 4th of July in 1914, he them if you can help. It’s as simple as that,” he Sometimes there are tears, sometimes laughter. died on Martin Luther King holiday Sunday explained. Encourage people to go forth and conduct in 2001. His friends say this is no coincidence. their own readings. Help others hear the story Kohler said, “As a symbol of the concept of Most citizen advocates, and anyone who takes for the first time.” the ‘beloved community,’ Mr. Welcome stands the initiative to help a person in need, find that it is a reciprocal relationship. According on the shoulders of the American Civil Rights Kohler and Earl have facilitated the develop- movement. People are always looking to con- to Kohler, “You generally receive as much as ment of a web page (www.waddiewelcome. you give, which is why we refer to people like nect with one another. When the barriers be- com) and Facebook page where people can tween people come down, this concept comes Mr. Welcome as ‘unexpected teachers.’” These promote their own readings and even post are humbling life lessons that everyone could to life. People are freed by these connections.” pictures and share their experiences. By the time Welcome died, he had spent 15 stand to learn from. years influencing public policy. When asked why Welcome’s story is so im- Visit www.waddiewelcome.com or become a portant, Kohler responded, “It’s a story about As if Welcome’s achievements in life were fan of the Waddie Welcome Facebook page community, creativity and commitment. It’s to purchase the book and to find out how not remarkable enough, he is making an an opportunity to meet people who have big even bigger you can host a reading. For more information characters but who are often marginalized in about becoming a citizen advocate, visit the impression today. communities. Mr. Welcome, Mrs. Reeves, Group read- Resources section on page 30 or contact your Mrs. Selman all possess huge characters. Lester local advocacy office. ings of Waddie Johnson was a very busy man, but not too Welcome and the busy to become a citizen advocate. There’s a Sharing the human experience with one Beloved Com- power in gathering people together consis- another – a humbling life lesson from which tently with a common purpose to take action. everyone could stand to learn. The book will open a person’s eyes to ideas and

“It’s a story about community, creativity and commitment. It’s an opportunity to meet people who have big characters but who are often marginalized in communities.”

Waddie Welcome’s lawyer, Lester Johnson winter 2011 | gcdd.org 11 ...And Justice For All. Landmark settlement supports Georgians with developmental disabilities and mental illness to move out of institutions and into communities with proper services. By Bill Lewis

“Good things come to those who wait.” Perhaps that old adage never had more meaning than in the agreement “Georgia will stop recently reached between the U.S. Department of Justice admitting individuals with developmental gand the State of Georgia in a lawsuit aimed at moving disabilities to its people in Georgia who have disabilities out of state state-run hospitals by institutions and instead serving them in the community. July 1, 2011, and will In the June 1999, Olmstead v. L.C. and E.W. case, the Supreme Court affirmed the right of transition all individuals individuals with disabilities to live in their community. That was supposed to settle the legal side with developmental of the issue, but the practical side was another story. disabilities already It’s not that Georgians with disabilities didn’t want to leave the state institutions, but they living in the hospitals were hindered in their attempts to assimilate into communities because of the lack of essential to community settings services and support. With a distinct lack of progress shown, the Justice Department began an by July 1, 2015.” investigation in 2007 and found that preventable deaths, suicides and assaults occurred at a higher frequency in state hospitals than in the general community.

In January 2009, a settlement was reached with the State of Georgia regarding conditions in the Olmstead Plaintiff, hospitals. But, further investigation showed that the State also failed to serve individuals with Lois Curtis, celebrated the mental illness and developmental disabilities in the most integrated setting appropriate to their 10th anniversary of the needs...a clear violation of the Americans with Disabilities Act (ADA) and the Olmstead decision. Olmstead decision. Finally, in January 2010, the Department of Justice (DOJ) filed a freestanding complaint under the ADA and a motion for immediate relief seeking to protect individuals confined in hospi- tals from continued segregation and from threats of harm to their lives, health and safety. October 2010 Settlement The result of all the legal maneuvering manifested itself in October with the landmark settlement. On that day, Thomas E. Perez, Assistant Attorney General for Civil Rights, applauded the State of Georgia officials for their willingness to work on solutions and said, “Under this agreement, the state of Georgia will provide services in the community to hundreds of people with developmental disabilities and thousands of people with mental illness. The promises of the ADA and Olmstead will finally become a reality for individuals in Georgia with mental illness and developmental disabilities.”

12 Ma k i n g a Di f f e r e n c e “ Many people worked very hard on this settlement. And while it isn’t perfect, it goes a long way to set the stage for thousands of people to have appropriate community supports who are unnecessarily institutional- ized or at risk of institutionalization in Georgia.”

Specifically, Perez pointed out that, under So What Does left him without an option for supported the agreement, “Georgia will stop admitting housing or supported employment. Through individuals with developmental disabilities It All Mean in the the Department of Justice settlement agree- to its state-run hospitals by July 1, 2011, and Real World? ment, David will have access to supported will transition all individuals with devel- housing that will empower him to live on his For people like David, it means the possibility opmental disabilities already living in the hos- own. With additional services, he could be of having his own apartment. David has been pitals to community settings by July 1, 2015. supported to fulfill his dream of becoming an institutionalized for many years and is cur- The state will provide support coordination interior decorator or a small business owner. rently at Central State Hospital (CSH). He services to ensure individuals will have access has a mental health diagnosis of schizophre- to the necessary medical, social, educational, Sam is a young man who has been at Grace- nia and also has a developmental disability. transportation, housing, nutritional and other wood for several years, and both he and his But David is young, enjoys his family music, services. In addition, many of those people mother want him to return home. He enjoys and being outdoors. with mental health needs will be transitioned taking walks, the outdoors, and spending time with his mother. However, he experi- out of jail and have access to proper care.” David has been denied services through the ences some challenging behaviors and needs developmental disability waiver, and that has behavior supports to live at home. A provider

winter 2011 | gcdd.org 13 “The Olmstead decision strongly was identified for Sam, and his needs were he was only supposed to be there briefly.H e’s affirmed that people assessed. When the provider submitted the been on the waiting list and has waiver fund- request for extra funding to provide Sam all of ing available, but it’s been difficult to find a with disabilities the supports he needs, they were denied. So, provider to serve Robert and meet his needs have a right to Sam remains at Gracewood. with the restrictions on exceptional rate waiver funding. The U.S. v. GA settlement, though, is live and receive Through the DOJ settlement agreement, Sam good news for Robert. He will now be able to services in the most will have access to a full range of behavioral receive the supports he needs through a waiver supports, allowing him to return home to to live at home with his grandmother. And integrated setting live with his mother. In addition, Sam has appropriate crisis supports will be available to appropriate for expressed an interest in working, and could him so he won’t find himself restrained in the receive support to have a job. As he grows up, local hospital again. them as individuals.” he would also have the opportunity to live on his own in supported housing. Groundbreaking Robert is 18 years old and very close with his family. He enjoys swimming, listening to and Meaningful music and being on the go. Unfortunately, his As those three stories illustrate, the U.S. v. grandfather died a few years ago, and Robert GA settlement agreement opens the doors to misses him a lot. His grandmother, though, new lives for a great number of people with is extremely devoted to him. At one point, disabilities. Robert needed some additional supports in his grandmother’s home to help him through some “Many people worked very hard on this settle- crises. He went to a temporary immediate sup- ment. And while it isn’t perfect, it goes a long port home, but did not receive the supports he way to set the stage for thousands of people needed while there and returned to his grand- to have appropriate community supports who mother’s home with an inadequate discharge are unnecessarily institutionalized or at risk of plan...one that lacked in-home supports. institutionalization in Georgia,” Georgia Advo- cacy Office Executive Director Ruby Moore said. “This settlement outlines over 25 specific “The right to live in the deliverables including implementation and world like everyone else, quality assurance safeguards so that Georgians to decide where to go with disabilities can live good lives in the com- munity with everyone else.” and what to do based on one’s own desires Moore and Josh Norris, Esq, director of and not the desires and legal advocacy at the Georgia Advocacy Office point out that there are three key aspects of convenience of others, the agreement: to make choices and face • Individuals with disabilities will have a the consequences meaningful opportunity to be able to live – all of this is the hallmark in their own homes or with family. The of an adult citizen.” agreement recommends funds in addition to Medicaid waivers for accommodations. • No more institutions. In the past, the Robert has autism and uses few words to policy has seemed to be “when in doubt, communicate. Soon after being at home, he admit.” The settlement mandates that was sent to a local hospital in a crisis where he Georgians with disabilities will no longer was restrained, because the hospital was not be admitted to state hospitals. Instead the place for him. Unfortunately, a provider they will be assisted in finding the ap- was not identified during this crisis period and propriate support that will enable them to Robert was transferred to Central State Hospi- live at home and in their communities. tal. He’s been there for over a year even though

14 Ma k i n g a Di f f e r e n c e • The state will be held accountable. developmental disabilities. Although the state Lewis Bossing, senior staff attorney at the Olmstead had the legislation but has successfully transitioned many people with Bazelon Center, concurs. “This settlement lacked the follow-through. Elizabeth developmental disabilities into the community, agreement is the first document that has Jones, disability expert and the court the population in the state hospitals has not fully articulated the distinct array of mental appointed independent reviewer, will be changed significantly. Substantial challenges health services needed to achieve full responsible for reviewing the states com- exist for people with mental illness. community integration. It also is the first pliance to the mandates of the settlement document that holds the State accountable and reporting to the court. Sue Jamieson, lead counsel for the plaintiffs in for implementing the system that Georgians the Olmstead case and an Atlanta Legal Aid The settlement agreement does not directly with mental illnesses need and deserve.” Society attorney says that, “While Georgia’s The Bazelon Center represents a coalition address the exceptional rate process. However, policy has always been to move institutional- according to Norris, “It will very likely have of stakeholders that advised the federal ized people into the community, the State district court in the U.S. v. GA case. an impact on that funding process as many of hasn’t done it.” the people in the target population covered by For over ten years now, full inclusion has been the agreement will need exceptional rates to be Now, though, Jamieson says, “There is a the dream. And while the State of Georgia has supported appropriately in the community un- proposed multi-million dollar budget that has long maintained an official policy of integrat- der the current structure of our DD waivers.” been developed to fund the services outlined ing its citizens with disabilities, the reality has in the agreement.” Those include mainly ACT In a speech given to University of Cincinnati been that their needs have not been adequately (Assertive Community Team), Supported served. What was missing has now been ad- College of Law on March 3, 2010, Samuel R. Employment, Medication Management, Peer Bagenstos, principal deputy assistant attorney dressed and given strength by the October Support, Social Work/Case Management and 2010 settlement agreement. general at the DOJ, summarized the funda- Supportive Housing.” mental goal of the settlement. “The right to “The Olmstead decision strongly affirmed live in the world like everyone else, to decide “One of the key elements,” as Jamieson points that people with disabilities have a right to where to go and what to do based on one’s out, “is to keep people from going back into live and receive services in the most integrated own desires and not the desires and conve- the state hospitals.” Supports can be brought setting appropriate for them as individuals,” nience of others, to make choices and face the into apartments or group living homes based said Perez. “Under this agreement, the State consequences – all of this is the hallmark of an on needs. Some people may require 24/7 care, of Georgia will provide services in the com- adult citizen. What Olmstead is about – what but the ACT team provides a wraparound munity to hundreds of people with develop- we are always trying to keep in mind as we go service concept. They can provide activities of mental disabilities and thousands of people about our Olmstead enforcement – is ensuring daily living (ADL) such as housekeeping, meal with mental illness. The promises of the ADA that people with disabilities are treated as full preparation, shopping, bathing, etc. and Olmstead will finally become a reality for citizens,” he said. individuals in Georgia with mental illness and “The key thing to note,” says Jamieson, “is that developmental disabilities.” these people are trained to address behavioral Policy vs. Actual Practice health needs. Crises can now be addressed in The settlement agreement addresses people the apartment or home without the person with mental illness as well as people with having to return to the hospital.”

“The promises of the ADA and Olmstead will finally become a reality for individuals in Georgia with mental illness and developmental disabilities.”

winter 2011 | gcdd.org 15 Is it Okay for Individuals with Disabilities to Use Derogatory or Socially Unacceptable Words to Refer to Themselves? I think disabled people can call ourselves whatever the hell we like. If black people can reclaim the ‘N’ “word and gay people do likewise with This issue’s Perspectives were inspired by a terminology, then so can disabled recent blog from GCDD’s website. It was inspired people. Ask Ian Dury, altogether now by a debate that was discussed in a Making a Difference ‘I’m spasticus autisticus… editorial meeting. GCDD invited its constituents tto weigh in on the issue. perspectives Here is the blog post and the responses:

“In a recent editorial meeting, the staff at GCDD discussed differing perspectives on People First Language, a debate that resurfaces within the disability community from time to time. I find the use of such terms to be It was brought to our attention that some individuals are referring to themselves as ‘cripples” very retrogressive for the disability or “crips.” Others are concerned that embracing such an attitude will move us in the wrong movement especially in Africa where direction. It seems that it was not too long ago that we were working diligently to convince “terminology has such a huge influence the public to stop using what were considered to be demeaning words and phrases that placed on people’s attitudes. undue emphasis on the disability rather than on the person. We’ve moved away from using It was brought to In my experience, youth do not always the word “handicapped” to refer to people, and have the maturity to use words respon- we’ve eliminated official use of the “R” word our attention that sibly and tend to use the “R” word and label in the Federal government. But even when some individuals are ““cripple” in negative terms when refer- certain words are used by someone with a dis- referring to them- ring to themselves and others. ability, there are those who may respond with selves as “cripples” disappointment or frustration. Some may take offense and get angry. At GCDD, we adhere to or “crips.” My late husband Sam and I talked the guidelines set forth in People First Language about this. Sam was African American and discourage the tendency to define individu- and I am white. Sam compared it to the als by their disabilities. In fact, we regularly present these guidelines to journalists across the “N” word. He said no one gets upset “ State and freely distribute them upon request. However, we have heard that the individuals are when African Americans call each other using the term as one of empowerment and authenticity, so we became very interested in the the “N” word, but you will not hear the dynamics of the argument. We want to address the issue here by requesting that people write civil rights organizations calling them- comments to share their perspectives for or against it. So we ask, do you think it is it okay for selves or others the “N” word because individuals living with disabilities to refer to themselves as cripples, or by any other term that we are trying to teach RESPECT and may be interpreted as derogatory by the standards of today’s disability movement?” receive RESPECT. Sam also pointed out that it is not ok for a white person to use the “N” word ever. For Sam, he Tell us your thoughts: never used that “N” word because he visit gcdd.org/blog and weigh in felt respect starts with himself first. Sam was and I am disabled and proud! I am on this and other ongoing discussions. proud of who I am and the disability is just part of that. But I am not a crip or gimp. I believe in being the change. It starts with me.

16 Ma k i n g a Di f f e r e n c e I agree with the woman and her late husband. Respect starts ‘at home,’ but I have also Language changes over time and con- found that titles and names seem to affect those without a disability more so than they do those notations change with it. Thus the unac- affected. For example, my father was a child and young man in the 30’s and often referred to ceptable terms ‘morons’ or ‘idiots’ gave “himself as a ‘mick’ (since he was Irish), but if you were not Irish and used the term he would be “way to the more acceptable at the time insulted. He saw it like many of us see our families…we can call them names, but no one else terms ‘retarded’ or ‘trainable’ or ‘edu- can. So if a person with a disability feels comfortable using an outdated term, it is his or her call. cable’ which gave way to ‘developmental But that person should take into consideration how the people around him or her might react disabilities,’ which has given way to to using it. So did I ramble too much on that one? ‘intellectually challenged’ or ‘intellectu- ally impaired.” Twenty years from now there will likely be another term come I have a learning disability and I may be slow at learning some stuff or ask someone to repeat into play as the negative connotations a question or something, but it just means I did not understand what was said. I don’t want attach themselves to the current terms. to be called a ‘crip’ or anything else, because I am the same as everyone else! Just because Just using politically correct language someone has a disability doesn’t mean you can call them stupid or ‘crip’ - it just means they “ doesn’t necessarily change underlying have problems learning. feelings and attitudes.

Eventually we may be able to get beyond labels and realize that everyone has strengths and weaknesses, obvious or not, and everyone has challenges in some situations. I have a disability. I happen to be blind. Blindness is a simple term that accurately As of now, labels are here to stay as describes my disability. I don’t consider long they are required for eligibility for “‘blind’ to be a dirty word, so why not call educational services, financial benefits, it what it is? It is respectable to be blind. charitable contributions, insurance cov- So why hide behind convoluted politically erage, workplace accommodations, and correct euphemisms to dress up a disability. state and federal program funding. While my disability doesn’t define me, it is still a characteristic of who I am. I am not In my years of working with people with offended when someone says I have curly disabilities, the ‘negative’ terms don’t hair or brown eyes, and I am not offended seem to matter as much to individu- when I am described as blind because it’s als using them to refer to themselves. okay to be blind. We have to change what So terms such as ‘crips’ might be fine it means to have a disability. Then we can within the family or among close friend, just call it what it is and move on. but might be offensive if coming from outsider.

The event poster that sparked the debate.

In general, People First Language is a great I regularly refer to myself as a cripple and my friends use the word too. It’s the intent behind practice, but like anything good (or bad the word that is a problem, not the word itself! By its very definition I AM a cripple! It is for that matter) can go to the extreme in only a problem when it is used as an insult. I am crippled and proud of it. Yes, I am differ- “either direction. No matter how hard peo- “ent but why is that a problem? I am more offended by people who insist on being “politi- ple try they will end up insulting or upset- cally correct” as they like to try and deny my differences! I am proud of who I am and my ting someone sometime somewhere. I disabilities are a part of me! I have known many people who use cripple or other ‘bad’ words recently attended a training session where to describe themselves or others, but as long as they do not intend it as an insult then it isn’t it was explained that it was no longer PD one! On the other side, I have heard people sneer the word “disabled” which then becomes or PF to say, ‘Jane Doe is diagnosed with an insult! Blame the people and their ignorance, not the word, as ignorance can make any ADHD or Lupus’ but to say instead ‘Jane word an insult! Doe experiences ADHD or Lupus.’ In my opinion, this is a little too extreme.

winter 2011 | gcdd.org 17 Doug Crandell: Advocate and Author Doug Crandell is the author of And Playing The Part Of The several books, Disabled Person Is... including The Flawless Skin Someone Who’s Really Disabled? of Ugly People, By Bill Lewis which is soon to be made into a motion picture. Crandell has a long history with the developmental disability community. As an educational Fans of the TV show Glee know there’s program specialist, at the University of Georgia’s Institute on a character named Artie who is in a wheelchair. Human Development & Disability, The doctor who performs the autopsies on Crandall’s work focuses on CSI: Crime Scene Investigation uses two employment issues. forearm crutches to get around the morgue. As a writer, it comes naturally to him to weave individuals with dis- fBut as the Hollywood Reporter revealed in an “More than a third of performers with abilities into his stories. “I grew October, 2010 article, “There are 587 series- disabilities reported facing discrimination up on a pig farm,” says Crandell. regular roles on scripted network primetime in the workplace, either being refused an “My older sister has an intellectual television this fall. Only six of them have dis- audition or not being cast for a role because disability, my mother had severe abilities. Only one of those six is portrayed by a of their disability, the study found. Many depression, and my grandfather disabled actor.” performers fear being candid about their health had dementia...right at the time or needs to avoid pity or being seen as inca- my fingers were nearly cut off in a That actor is Robert DavidH all, the CSI actor pable of doing a job.” farming accident, and I was unable who walks on two artificial legs. Actor Kevin McHale (Glee) does not use a wheelchair away to do any work around the farm. There has And all members of a farm family from the set. Hall is unabashed in his support work. That kind of shaped my of fellow actors with disabilities. Access Hol- been progress. lywood recently quoted him as saying, “I think view of the world that we can That’s not to say strides haven’t been made over there’s a fear of litigation, that a person with all contribute. It doesn’t just the years...or at least baby steps taken. Terri disabilities might slow a production down, fear have to be with our bodies.” Mauro, author of the “Special Needs Children that viewers might be uncomfortable.” But he’s Guide” blog (and mother of two children with In his novel, The Flawless Skin of not buying that. “I’ve made my living as an special needs), writes: “The character I always Ugly People, which is currently be- actor for 30 years,” says Hall. think about when these kind of questions come ing made into a major motion pic- up is Joey Lucas on The West Wing, a pollster ture, the two protagonists are mis- The report also said that Hall is “chair of a played by actress Marlee Matlin, who like her fits, suffering from physical flaws multi-union committee for performers with character, is deaf. Though Joey’s sign language (acne and obesity) that, on the disabilities, part of a small band of such steadily and occasional spoken language was used outside, make them seem unlove- working actors on TV that includes Daryl to great comedic (never at her expense) and able. This is precisely the kind of “Chill” Mitchell, of Fox’s Brothers; teenager dramatic effect, she was never a Deaf Pollster. logic Crandell aims to undermine in RJ Mitte of AMC’s Breaking Bad; and ABC’s Her disability was one not terribly important the story. He explains, “Everyone Private Practice newcomer Michael Patrick element of a well-rounded and engaging char- deserves to be loved. Everyone Thornton.” acter, and I wonder how much the fact that the feels love. Albeit an unlikely one, The Access Hollywood report also stated that, actress could bring some personal experience to Hobbie and Kari’s is a love story.” “While TV has grown more inclusive of the part contributed to that.” The movie is scheduled to go ethnic and gay characters, those with More recently, an English producer has into production in Spring of 2011. disabilities represent a sizable minority that developed a TV show for the UK this season For more information about hasn’t fared as well – whether with genuine that features a cast fully populated by people Crandell and his books, visit or fake portrayals.” www.dougcrandell.com. 18 Ma k i n g a Di f f e r e n c e with disabilities. Called Cast Offs; it’s a reality show about six disabled people marooned on Cast Offs is perhaps a British desert island. As one reviewer put it: television’s first attempt “In a twist from conventional reality TV, the actors have the disabilities that they portray to not sympathise with but will follow a script in a mock documentary the disabled community, way, one which promises to highlight the dark but to provide them with humor which often treads on the boundaries a forum for comedy. of decency. Cast Offs is perhaps television’s first attempt to not sympathise with the disabled community, but to provide them with a forum or multimedia project by adding characters Media Access Awards. for comedy. Much has been made of just how with depth, warmth, drama and humor that In October, a giant step toward more recogni- the various disabilities on the show will be you won’t find anywhere else.” tion of entertainers with disabilities took place portrayed. Reactions to trailers and the first Screen and scriptwriters who are think- at the 2010 Media Access Awards banquet. episode have been positive, with many dis- ing about including people with disabilities The producer of the show, Deborah Calla, abled groups indicating that programming like in their projects are encouraged to contact wrote, “While the last thing Hollywood needs this opens the door to the possibilities of more V.A.S.S. The organization functions as a is another event where everyone slaps each disabled casting.” resource center that can direct writers to con- other on the back for a job well done, this was One of the show’s creators is Jack Thorne. Not sultants who have first-hand or other expert an event which deserved our full attention.” only did he help create Cast Offs, but he has a knowledge of a specific disability. “The Media Access Awards celebrates individu- disability himself and appears on the show. He Authenticity is not only preferred, but de- als and organizations in the entertainment also wrote the screenplay adaptation of Geor- manded, especially when it comes to medical and broadcast industries for their efforts in gia author Doug Crandell’s book, The Flawless issues. One former soap opera scriptwriter said promoting the awareness and the accurate Skin of Ugly People (see sidebar for more infor- his show once featured a character who was on portrayal of the disability experience.” mation about Crandell and his book). kidney dialysis awaiting a transplant. “I spent several days at the UCLA Medical Center The Awards were funded in part by some of The Slow Awakening interviewing physicians, technicians and, most the largest entertainment organizations in Hol- of Hollywood. importantly, the dialysis patients themselves lywood. Calla observes that AFTRA (Ameri- to understand how the treatment and disease can Federation of Television and Radio Art- Hollywood, for all its faults, may be opening affected their daily lives.” ists), CSA (Casting Society of America), PGA its collective eyes to the situation as well. Value (Producers Guild of America), SAG (Screen Added Script Services (V.A.S.S.) is a company That storyline took place many years ago and Actors Guild) and WGAwest (Writers Guild of designed to “enable access to the disabled mar- the actress playing the role did not have kidney America West) all contributed to the event. ket.” Its mission states: “At V.A.S.S., we help problems. “Quite truthfully,” says the writer, you reach out and resonate with an audience “we never even thought to hire an actress who As Calla noted in her commentary about the of over 50 million Americans with disabilities. might actually have that disability to play the ceremony, “What we need to remember is that Our service adds value to your film, television part. It just wasn’t done then. Looking back, our media has a social responsibility and the though, there’s no doubt an actress power to educate and entertain. If we portray on dialysis would certainly have people with disabilities as complex human been able to bring great authentic- beings with dreams, desires, nobility and short- ity to the part.” comings like any other person, we will not only be taping into a whole world of untold “There are 587 series- Today, even a Facebook group stories but we will also be affecting our societ- regular roles on scripted is dedicated to portraying more ies into being more tolerant and inclusive.” network primetime disabled characters with disabled television this fall. Only six actors. Their page description And it all just might make for some of them have disabilities. reads: “This group has been set up superb entertainment. Only one of those six to highlight the importance of the is portrayed by a fact that there are NOT enough disabled actor.” disabled Actors and Actresses in serial dramas and general televi- sion programs.”

winter 2011 | gcdd.org 19 2011 Legislative Session Setting an Agenda in the Midst of Uncertainty By Pat Nobbie, Ph.D.

Could there be any more things up in the air at the start of this legislative session? With any new administration, over 750 people we wait with baited breath for the announcement of the with developmental individuals who will hold key positions with whom we disabilities living in the c will try to establish communications – particularly, the state hospitals. person overseeing health and human services policy, and after that, the Governor’s Floor Leaders. Then 5,700 people on the there could be new commissioners. waiting list for NOW or COMP waivers. There is a hole in the budget anywhere from • There are over 750 people with $1.3 billion dollars to $1.8 billion dollars. developmental disabilities living in There are several dozen new legislators and the state hospitals. 163 people with some new leadership in the majority and • There are 5,700 people on the waiting physical disabilities minority parties in the House and Senate. known to be waiting for list for NOW or COMP waivers. This New tax legislation is looming, crafted on the number is most likely underestimated. an ICWP waiver. work of the Special Council on Tax Reform and Fairness; the Department of Justice • There are 163 people with physical Settlement Agreement with the State needs disabilities known to be waiting for an 17,000 people with appropriations to be implemented; and, the ICWP waiver. There are many more developmental disabilities Olmstead Plan sits in the Governor’s office people unidentified in nursing homes living with caregivers over awaiting approval. who have expressed their wish for a home the age of 64. in the community. Regardless of uncertainty however, we go • There are 17,000 people with forward stating the needs and providing good developmental disabilities living 190,000 individuals information to policymakers. Despite the fact with caregivers over the age of 64. living with a disability who that the Department of Behavioral Health • The Price of Neglect estimates that there require some assistance and Developmental Disabilities (DBHDD) are 190,000 individuals living with a from a family member or did not experience the level of budget cuts disability who require some assistance caregiver every day... that most other state agencies did, and that there were actually some additional dollars from a family member or caregiver every added to their budget to improve conditions day, at great sacrifice to the economic in the hospitals because of the Department of well-being of that family and individual. Justice lawsuit, the needs of folks with devel- As always, the Georgia Council on Devel- opmental disabilities is substantial. opmental Disabilities met in October to

20 Ma k i n g a Di f f e r e n c e The most important consider the initiatives and budget items that we will work on during the legislative session. issue in this tier is We outline them here and invite your support! Unlock the Waiting Tier I: GCDD Lists! campaign for Takes the Lead. home and community The most important issue in this tier is the Unlock the Waiting Lists! campaign for based services. home- and community-based services. The Unlock campaign is basing its budget request on the settlement agreement between the State and the U.S. Department of Justice (see ...And Justice For All article on page 12). These budget items are also in the proposed DBHDD budget. The items are as follows: • 150 COMP waivers to support moving people into the community from the state hospitals in FY2011A and in FY2012 • 100 waivers for people ALREADY in the community but on the waiting lists FY2011A: $3,587,634 FY2012: $14,556,172 • Services for 400 families to receive family support services. (These amounts represent state dollars) FY2011A: $1,297,600 FY2012: $1,497,600 • Crisis, respite and nursing supports to build up community infrastructure for when admissions to state hospitals are discontinued FY2011A: $9,590,095 FY2012: $19,130,190

In addition, we will be supporting funds to provide the Independent Care Waiver to 157 people on the waiting list. We know there are 135 outstanding Money Follows Person waiv- ers available in the budget which have not been awarded yet, and we will be advocating for those to be provided to individuals who need them.

The other Tier I item is to pass the state Indi- vidual Development Account Legislation that enables an individual with disabilities to save toward an accessible vehicle, assistive technol- ogy, communication devices or home modifi-

winter 2011 | gcdd.org 21 The demand for houses with universal, visitable design will only increase with the aging of the population, returning veterans who have mobility impairments as a result of their service, and the mandated transition of individuals from institutions to the community.

cations, in addition to the standard purposes Streamline the Medicaid Appeals Process: for IDAs, new homes, education or business Currently, if a family or individual appeals a start-ups. We got this legislation all the way to decision against them concerning Medicaid, the end of the process last year, only to have and the Administrative Law Judge rules in it die in the end due to a technicality. We will their favor, the Department of Commu- work on this with the Center for Financial In- nity Health can overturn that decision. This novation and Independence. This legislation, which Tier II: GCDD is a very small bite of Supports Another more comprehensive Leading Organization(s). family friendly work-life Flexible Sick Leave legislation: Many indi- policy, would enable viduals have paid sick leave with their work- parents with paid sick place, but can only use it if THEY are sick. This leave to use it to care legislation, which is a very small bite of a more comprehensive family friendly work-life policy, for sick children or Get would enable parents with paid sick leave to use aging parents. Connected it to care for sick children or aging parents. We are supporting 9 to 5 Atlanta and a large coali- We will be keeping you up- tion on this legislation. to-date on what occurs in legislation would eliminate agency discretion, the legislative session via our New Home Access Legislation: This is the and send the appeal directly from the Office of State Administrative Hearings directly to blog, Facebook, Twitter, fourth year working on this legislation, which Superior Court. The Georgia Advocacy Office Moving Forward legislative would increase accessibility in all new single has worked with students in the Health Law newsletter, and GCDD family homes by requiring one zero-step entrance, 32” wide interior doorways and program at Georgia State University to draft grassroots advocacy email the legislation. alerts, so visit gcdd.org to blocking to support grab bars in the bathroom. The demand for houses with universal, visitable connect with us through any Support Legislation to establish a Commis- design will only increase with the aging of the and all of these mediums. sion for the Blind and Visually Impaired: population, returning veterans who have mobil- We want our website to be a For several sessions, The Georgia Coalition for ity impairments as a result of their service, and forum for you to express your the Blind and Visually Impaired has worked the mandated transition of individuals from on research and legislation to establish a Com- thoughts, so sign-up for our institutions to the community. We will support mission that would oversee the services which mailing lists, stay informed Concrete Change and a coalition of aging and are now delivered by Vocational Rehabilitation and make yourself heard! housing advocates to pass this legislation. (VR) in the Department of Labor. A few states

22 Ma k i n g a Di f f e r e n c e have such commissions, and research con- ducted by the University of Mississippi found The population of citizens that service delivery through an independent over the age of 64 will commission structure was more effective than increase dramatically in services delivered through VR. the next 10 years, along Assist coalition to develop legislation for with their needs... Assisted Living Facilities to create addi- tional long-term care options so individu- 64 als who become more disabled can age in the Blind have had this on their agenda for place with appropriate supports. Currently, several legislative sessions. state law requires residents of assisted living Restore $1,045,000 in state funding facilities to be independently mobile. If they to con- become more impaired, they are required to tinue the nutritional services program in the move to a nursing facility. This legislation Division of Aging. These funds were cut from would enable individuals who become more the Division of Aging budget, were restored disabled and need a higher level of care to before the FY 2011 budget was completed, stay in the place where they have made their and then were cut again in the reductions home. A coalition of advocates from the ag- that occurred during the summer. These Watch List funds provide Meals on Wheels. ing and long-term care community will carry Every year, there are issues this legislation. The Council on Aging is advocating for that may come up that we just Department Revisions to the Elections Code: The elec- legislation to establish a separate have to track and be prepared of Aging tion code underwent some revisions several . The population of citizens over the to act on. One of these is the sessions ago to make it easier for people with age of 64 will increase dramatically in the potential that the Department disabilities to seek assistance at the polls next 10 years, along with their needs, and of Community Health will re- without having to verify their disability or the Coalition on Aging feels the needs of this lease a request for proposals population will be better served in a depart- “certify” it with an oath, but a few places in to implement a managed care ment focused on aging issues. the code still define disability as physical. model for the Aged, Blind and Individuals with sensory or cognitive impair- Support legislation to increase the minimum Disabled category of Medicaid ments also vote and may need assistance, but wage for tipped workers (9 to 5 Atlanta). recipients. Other items we are their disability is not overtly physical. This watching is any legislation pro- change would remove ‘physical’ from the Support the legislative agenda for scattered posed by the Department of definition of disability describing who can site, integrated housing with appropriate sup- Behavioral Health and Devel- seek assistance at the polls. The Arc of Geor- ports for individuals transitioning from the opmental Disability to imple- gia is taking the lead on this legislation. state hospitals. The Georgia Association for Supportive Housing is carrying this agenda, ment the Settlement Agree- which includes housing support services for ment between the Department Tier III: GCDD Will people with mental illness, but the GCDD of Justice and the State. Sign On to Materials will support the items that reflect the housing This will be an interesting year, to Indicate Support. needs for the people with developmental dis- abilities transitioning from the state hospitals. and it is more important than In this category, GCDD will allow organiza- ever, with a new administra- tions to use our name on their materials or in This legislation would tion, and the opportunity to committee meetings in support of their posi- enable individuals who redesign community services, tion or initiative. We briefly describe below for advocates’ voices to be the legislative or budget issues which we will become more disabled heard. Make sure you are sign on to support. and need a higher level signed up for Capitol Impact, Sign on to Support the Blind Persons of care to stay in the and check gcdd.org for up- Braille Literacy Rights and Education Act to place where they have dates, links to Unlock the Wait- ensure teachers of children who are blind are made their home. ing Lists! website and Face- literate in Braille. The Georgia Coalition for book pages, and follow GCDD on Twitter! winter 2011 | gcdd.org 23 13th Annual Disability Day at the Capitol February 24, 2011

Unlock the Doors UNLOCK THE to Real Communities! DOORS TO REAL That’s the theme for the Georgia Council On Developmental COMMUNITIES! Disabilities (GCDD) 13th Annual Disability Day at the Capitol that Your registration invites people with disabilities, family members, policy makers, business leaders and providers to gather at the Capitol in celebration includes one t-shirt of community, advocacy, friendship, and achievement. In 2010, nearly and lunch per attendee. 2,000 Georgians attended the public rally on the steps of the State Capitol in a powerful show of support for disability rights.

SCHEDULE In 2011, Disability Day attendance is expected to grow, strengthening OVERVIEW its presence and position among the largest events on record held annually during the official legislative session. 2011 also marks the 9:00 am – 11:00 am 40th anniversary of the historic Developmental Disabilities Bill of Registration/T-Shirt & Rights Act of 1971 and the Lunch Wrist Band creation of agencies such as Pick-Up/Activities at the GCDD throughout the U.S. Georgia Freight Depot

11:00 am – 12:30 pm Rally Program on the Capitol Steps

12:30 pm – 2:00 pm Lunch at the Georgia Freight Depot

For more information, visit gcdd.org or call 1-888-ASK-GCDD Join Us!

24 Ma k i n g a Di f f e r e n c e Attendee RSVP Form This year Disability Day has an exciting new Disability Day at the Capitol • February 24, 2011 look with a redesigned Register online at gcdd.org to get a t-shirt! GCDD logo and the

Name: ______color change of t-shirts from Red to Blue! Organization: ______

Total # attending:______Mailing Address: ______disability day ______

City:______State:______Zip Code:______

Email:______

Telephone: ______

I plan to attend (please check): q Lunch Optional $10.00 donation per person to support luncheon is appreciated, but not required.

Total payment amount: ______

Total amount enclosed: ______

Please make check payable and return to: Georgia Council on Developmental Disabilities Disability Day Registration 2 Peachtree St. NW, Ste. 26-246 Atlanta, GA 30303

For more information about Disability Day, call Kim Person at 404-657-2130 or email her at [email protected].

Please note special accommodations we should be aware of:

______

winter 2011 | gcdd.org 25 expert update

The Road to Inclusion Starts Here By Ruby Moore and Josh Norris, Esq., Georgia Advocacy Office

The U.S. v. GA settlement agreement is groundbreaking. It addresses the specific harm of inappropriately institutionalizing hundreds of people with developmental disabilities and lays the groundwork for a much fuller discussion of what all people need to Ruby Moore and Josh Norris live meaningful lives in their communities – homes, family, friends, tmeaningful employment and full participation in community life. It creates a framework for needed conversations about what Expert Update should be happening for people with disabilities in Georgia. There are a couple of aspects of the agree- that those who would have been admitted ment that bear mention. First, hundreds of in the past will instead receive appropriate “The challenge ahead people with developmental disabilities in help in their communities through waivers is how we make the Georgia will have an opportunity to live in and family supports. The challenge ahead is promise of these their own homes, not someone else’s home. how we make the promise of these provisions This is a monumental shift, as much of the meaningful for all Georgians with develop- provisions meaningful community services delivered in Georgia are mental disabilities, not simply those in the for all Georgians structured to place people in someone else’s state hospitals or at risk of hospitalization. with developmental home. The agreement provides for housing supports beyond simply a Medicaid waiver, Third, is the increased focus on accountabil- disabilities, not simply so that a person may choose to live in his or ity and the delivery of quality in services and those in the state her own home or family supports for people with disabilities. This will be hospitals or at risk home. The agreement also provides substantial The agreement accomplished through of hospitalization.” development of internal family support resources provides for housing so that families can and external safeguards access funds when they supports beyond and includes the ap- need them and when simply a Medicaid pointment of a nation- ally known disability long-term, intensive waiver, so that a supports are unavailable. expert, Elizabeth Jones, person may choose to as the court appointed Second, through this live in his or her own independent reviewer. agreement, Georgia home or family home. recognizes the rights of This settlement agree- its citizens with develop- ment, along with the mental disabilities to live draft Olmstead Plan in their own communities and not submitted to the Governor, creates a strategic institutions. The agreement provides that mapping of where Georgia needs to go to the state hospitals will no longer admit Geor- make good on the promise of full integration gians with developmental disabilities and and inclusion of its citizens with disabilities.

26 Ma k i n g a Di f f e r e n c e Mia’s space

What’s So Special? By Pat Nobbie, Ph.D., Mia’s Mom

This Fall, I really questioned the definition of “special needs.” Mia has two younger siblings, and at the risk of incurring their wrath, I’m going to relate what my life was like last semester with their brand of special needs. tThey both had a handicapping condition. to retain health insurance which we needed Neither one had a car. This is a serious because of the seriousness of his condition “I have two other disability in the South, as every parent of a weighed against his possible inability to carry teenager can attest. How they ended up in a full course load until we got a handle on children, younger than college without cars, when they each had a car his condition. Throw maintaining financial Mia, and there were of their own in high school is a long, expensive aide into the mix. He’s on a few medications, times where I had to tale. But they moved into Atlanta and had to needs to eat small meals regularly and not get stop and ask myself, deal with the limitations car-lessness imposes. stressed out. Stressed out? No problem! And I had to deal with them borrowing my “Who’s got the special car on a rotating, sometimes conflicting basis. Between the two of them, I was getting several needs here?” calls a day to assist with one thing or another Then there was moving. The new tenant – share the car, money, food, wifi access; buy for Child 2’s old place moved all his stuff in books, art supplies, groceries and football tick- before she had moved out, forcing us to move ets, and on my downtime, take the dog. I had out AROUND his stuff. The mover didn’t to issue the following directive: do not call me show up until the precise moment that it during the day unless you are in the hospital started to rain. We moved to an Atlanta stor- or jail. To which they paid no attention. age compartment, and the next week, from the storage compartment to a new apart- All this time, Mia, my child with the “official” ment. Her Atlanta apartment was not ready. special needs, gets up at 8:00 AM, eats breakfast Kitchen counters had been stripped and not at 9:00, goes out with Fabersha, lunches at mia’s space resurfaced. The water heater was leaking into 1:30, snacks at 2:00, gets the mail at 4:00, has the carpet. One week later, two dudes climbed dinner at 7:00 and dessert at 8:00. Monday under her roommate’s jeep in broad daylight is Weight Watchers, Tuesday is shopping, and cut the catalytic converter out from the Wednesday is gym day, Thursday is bowling, muffler system with a power saw. There went Friday is snack day, Saturday is laundry and the back-up vehicle. They had an alarm system shopping, Sunday is church and watching the they aren’t paying for go off when they weren’t toddlers. She never forgets a birthday and sends home, dicey phone reception, and no internet. cards. In her home, everything is in its place. And colds. She has the only folded sock drawer I’ve ever seen, and she never fails to make her bed. She Child 3 was seriously ill at the end of spring keeps a calendar. She has a well-ordered life. To semester, and applied for a hardship with- be fair, she is not dealing with all the stresses of drawal. First deadline, we didn’t have the college that they are. But Mia’s taking care of doctor’s letter, so they denied him. Confusion her business in a calm and steady way. caused us to miss the second deadline. The third deadline was one week before fall se- Special needs are relative. Now I am in need mester started. We had to make Solomon-like of respite! decisions between staying in school full time

winter 2011 | gcdd.org 27 straight talk

In Her Voice

By Marian Jackson, President, People First of Georgia

My mission is to help people with disabilities become empowered by teaching them how to speak up for their rights and work in the community for their needs. I was elected President of People Marian Jackson is a resident of First of Georgia because I can get the job done. I want to help Fitzgerald, Georgia and a speaker with the all people and see them come together to work for inclusion and Expert’s On Disabilities Speakers Bureau at m social change. the Institute on Human Development and Disabilities at the University of Georgia. I attended my first People First conference with the Real Communities Initiative group and Disability Day at the Capitol in 1997. and the Georgia Council On Developmental People with disabilities were talking to each Disabilities. We look for ways to help people other and telling stories about their experi- with disabilities get involved with others in ences. I understood what they were going the community to solve problems. We need through, and I felt their strength. It made me to come together and accept each other to want to become an advocate. They encour- make the community better for everyone. aged me. I got training and started working for what I believe in. My message is that I am for real. I belong here just like anybody else. I respect every- Joining People First of Georgia changed my body and I deserve respect. No one should life. It is a self-directed, supportive commu- look down on anyone else, or think anyone is nity. The organization is national and local, better than anyone else. People with disabili- run by and for people with disabilities like ties deserve an opportunity. We can learn. me. We have 600 members. We want to gain We can help. We can teach. If we are given a more members and open up more chapters chance, we can do a lot more than what some across the state. This is very important to cre- people think. People tell me that I see things ate change in Georgia. that others miss. Sometimes a person with a disability can know things that another straight Talk I am also a civil rights and human rights person does not. activist with ADAPT, a national grassroots activist organization that organizes nonvio- lent direct action and civil disobedience so “When a person asks “My goal is for more that people with disabilities can live in free- what they can do to help people with disabilities dom. We fight for community services and people with disabilities, supports to keep people from being locked to get leadership training I say education. Learn about away in nursing homes or institutions. and a have a chance to people with disabilities.” work with other leaders. When a person asks what they can do to I want to see families help people with disabilities, I say education. My goal is for more people with disabilities Learn about people with disabilities. We can become educated and to get leadership training and a have a chance teach what people with disabilities are about bring their knowledge to to work with other leaders. I want to see and how they can contribute to the com- families become educated and bring their the community.” munity. People in the community and people knowledge to the community. I hope more with disabilities need to get to know each people join People First chapters and they other. This is how they can learn to accept all come to Disability Day at the Capitol on each other, have good relationships and be- February 24. come real friends. These are issues I work on

28 Ma k i n g a Di f f e r e n c e real communities initiative

Gwinnett Parents Combine Efforts to Build Better Living Situations for Individuals with and without Developmental Disabilities By Claire Barth

In early 2010, GCDD met with the Community Action Pioneers of Gwinnett, a group of parents of individuals with developmental disabilities in the Gwinnett area. The purpose of the meeting was real to facilitate a Real Communities Initiative project in Gwinnett County communities compromised of individuals with and without disabilities working itogether to improve community life for everyone. initiative According to Caitlin Childs, organizing people with and without disabilities living director of the Real Communities Initiative, in the same area or building and working “Given that most of this group is directly af- together to meet one another’s needs. “The fected by disability, we wanted to know what idea is to gather some best practices from issues they were most concerned about.” Not these existing communities. We don’t want to surprisingly, the group was most interested reinvent the wheel,” she adds. The communi- in housing options for individuals with dis- ties are developing creative ways to meet the abilities, an especially hot topic given that needs of the residents, like pooling waiver the Department of Justice Settlement passed dollars to get more services and supports for in October mandates that five state institu- the money. tions will be closing by 2015. Regardless, Georgia There are currently 20 members in the Com- “We understand that must begin to plan how “The idea is to to assimilate people with munity Action Pioneers some government disabilities back into the gather some best group who contribute in subsidized funds are community. First and practices from various capacities. Jupiter- projected to be Gilbert adds, “Aside foremost, that means they these existing available as part of need places to live. from helping people communities. with disabilities, we help the new settlement, According to Detrice We don’t want to one another navigate the but our goal is to Jupiter-Gilbert, Com- reinvent the wheel.” systems of services and create communities munity Action Pioneer support.” that are self sufficient.” and parent of a child with special needs, “We Richard McKenzie, understand that some government subsidized Community Action Pioneers board president funds are projected to be available as part of summarized, “Everyone has a special talent the new settlement, but our goal is to create or gift that he or she can contribute to the communities that are self sufficient.” community. By advocating for people with disabilities, we hope to improve the quality Some research is required before the group of life for everyone.” can begin thinking about funding. Childs has plans to organize “learning journeys” for the For more information about the Commu- group. She elaborates, “There are some suc- nity Action Pioneers of Gwinnett and Real cessful cooperatives in Madison, Wisconsin Communities, visit www.gcdd.org or contact and Ontario, Canada that we are interested Caitlin Childs at [email protected] or in seeing.” Typically, the living co-ops include 404.657.2125.

winter 2011 | gcdd.org 29 Department of Entertainment & Disability Justice Settlement Doug Crandell www.dougcrandell.com United States Department of Justice www.justice.gov Glee www.fox.com/glee Georgia Advocacy Office www.gao.org Disability Day Bazlon Center www.bazlon.org Follow GCDD’s blog for updates. www.gcdd.org/blog Atlanta Legal Aid Society www.atlantalegalaid.org DSP Certificate Program Office of the Governor Dottie Adams, resources www.georgia.gov Family and Individual Supports Director [email protected] 404-657-2129 For additional information about Waddie Welcome the articles and issues in this Official Waddie Welcome Website edition of Making a Difference www.waddiewelcome.com LEAN Business magazine, consult the following Principles Seminar Chatham-Savannah Citizen Advocacy resources. Dottie Adams, www.savannahcitizenadvocacy.org Family and Individual Supports Director 912-236-5798 Georgia Council on [email protected] Developmental Disabilities (GCDD) Citizen Advocacy of Atlanta & DeKalb 404-657-2129 www.gcdd.org www.citizenadvocacyatlantadekalb.org 404-657-2126 or 404-523-8849 888-275-4233 (ASK-GCDD)

State Government Georgia Senate & The key to finding the right rental, right now, House of Representatives right where you want to live! www.legis.state.ga.us

Georgia Governor’s Office www.gov.state.ga.us 404-656-1776 • FREE to search • FREE to list • Thousands of listings • Special Needs resources

Department of Community Affairs

www.dca.ga.gov Equal Hous ng Oppo un ty

Georgia Housing Search www.georgiahousingsearch.org 877-428-8844

Department of Labor e 18th Annual Larry Bregman, M.D. Educational Conference www.dol.state.ga.us A conference for adults with developmental disabilities, their families and their caregivers. General Information www.georgia.gov Dance: Sat., March 5, 2011, 7:30 pm (Sponsored by DSAA) Conference: Sun., March 6, 2011, Registration at 8:30 am Georgia Lieutenant at e Selig Center | Atlanta, GA 30309 Governor’s Office For more info, contact 770.677.9345, www.ltgov.georgia.gov [email protected] or visit www.bregman.org. 404-656-5030 A program of Developmental Disabilities Services - Tools for Independence, a division of Jewish Family & Career Services

30 Ma k i n g a Di f f e r e n c e January February March January 17 February 4-5 March 11-12 Waddie Welcome Readings Abilities Celebration 2011 Navigating Team Training Contact: Tom Kohler Georgia Aquarium Macon, GA - Southern Team [email protected] • 912-236-5798 [email protected] Contact: Cynthia Spaulding www.waddiewelcome.com [email protected] February 15 January 18 Advocacy Day March 19 Arc of Georgia Atlanta, Georgia Microboard Association Meeting 2011 Legislative Reception Contact: Anna Watson Atlanta, GA 678-733-8969 • 888-401-1581 [email protected] • 404-657-2124 Contact: Nancy Vara www.thearcofgeorgia.org [email protected] • 678-983-6217 February 17 January 19-20 Aging and Disability Coalition March 25 Parent Mentor Contact: Sandee Panichi Project Search Quarterly Meeting Department of Education (DOE) [email protected] Savannah, GA Gainesville, GA Contact: Dottie Adams Contact: Patti Soloman February 24 [email protected] • 404-657-2129 [email protected] • 404-567-7328 13th Annual Disability Day at the Capitol Atlanta, GA January 26-29 Contact: Kim Person April ATIA 2011 Conference [email protected] • 404-657-2130 April 14-15 Orlando, FL www.gcdd.org GCDD Quarterly Meeting Contact: Assistive Technology Carrolton, GA February 25-27 Industry Association 404-657-2126 • 888-275-4233 (ASK-GCDD) [email protected] • 312-321-5172 Navigating Team Training Atlanta, GA – Northern Team January 28 Contact: Sandra Humphrey Project Search [email protected] Macon, GA Contact: Dottie Adams [email protected] • 404-657-2129 2011 calendar Planning an upcoming event? Send your information to Kim Shapland at [email protected] to be included in the spring calendar.

Best eviction notice ever!

winter 2011 | gcdd.org 31 Georgia Council on Developmental Disabilities 2 Peachtree Street, NW, Suite 26-246 Atlanta, GA 30303-3142 404-657-2126, www.gcdd.org Address Service Requested

Ma k i n g a Di f f e r e n c e A quarterly magazine of the Georgia Council on Developmental Disabilities Volume 11, Issue 3 winter 2011

save the date! 13th Annual Disability Day at the Capitol February 24, 2011