GCDD.ORG WINTER 2016

ADVOCATING FOR A BETTER GEORGIA

LEGISLATIVE PREVIEW: 2016 Legislative Session NEWS DISABILITY DAY: The Disability VOTE – Feel the Power! FOR YOU: EMPLOYMENT FIRST: Take YourWINTER Legislator 2016 | GCDD.ORG to Work 1Day On the Cover: WINTER 2016 GCDD set out across the State to listen to what changes people wanted to see over the next five years in Making a Difference regards to disability services A quarterly magazine of the Georgia Council on Developmental Disabilities VOLUME 16, ISSUE 3 and supports. (See story on page 6.) Advocating for a Better Georgia...... page 6 GCDD kicked off its strategic Five-Year Plan by hosting public forums across the State and gathering The Georgia Council on input through an online community survey. Developmental Disabilities, a federally funded state agency, works to bring about social and Looking Forward to the 2016 policy changes that promote Legislative Session...... page 12 opportunities for persons with An overview of GCDD’s agenda for the 2016 legislative developmental disabilities and their families to live, learn, session and how you can get involved. work, play and worship in Georgia communities. Disability Day Preview...... page 16 2016 theme: The Disability VOTE – Feel the Power! Get ready for Disability Day on February 18. RSVP now! People with Disabilities Take Georgia Legislators to Work ...... page 18 Eric E. Jacobson Take Your Legislator to Work Day (TYLTWD), hosted by Executive Director Employment First Georgia (EFG) and supported by GCDD, [email protected] brought together legislators with people with developmental disabilities and their employers. Valerie Meadows Suber Editor-in-Chief & Public Information Director [email protected] FEATURES 2 Peachtree Street NW Suite 26-246 DEPARTMENTS Atlanta, GA 30303-3142 Voice 404.657.2126 GCDD Viewpoint Perspectives Fax 404.657.2132 The Next Five Years...... 3 Growing Up with a Sister with Toll Free 1.888.275.4233 In The News Developmental Disabilities TDD 404.657.2133 by Sarah Shay ...... 24 www.gcdd.org GCDD Hosts Executive Director Leadership Summit, USDOE Becoming a Sibling Advocate Grant Expands College by Nick Perry ...... 25 O’Neill Communications Access to Students with DD ...... 4 Mia’s Space Around GCDD Annie and Christopher’s Devika Rao Mixed Greens Goes Mobile, Space...... 26 [email protected] Governor Deal Appoints Real Communities Nancy O’Neill New Members ...... 5 Intellectual Disability and the Design & Layout Expert Updates Death Penalty in Georgia ...... 27 Sibshops: Celebrations of the Straight Talk Contributions Made by Brothers Goals and Aspirations On the Back Cover: and Sisters by Kenneth Gagne...... 28 Advocacy Days will be expanded by Don Meyer ...... 22 Calendar ...... 29 in 2016 to train more people with Supporting Siblings of People Resources ...... 30 disabilities to advocate for policy with Disabilities changes in Georgia. Join our by Katie Arnold...... 23 Cartoon ...... 31 advocacy team and meet with legislators! (See story on page 12.) 2 MAKING A DIFFERENCE GCDD VIEWPOINT

ERIC E. JACOBSON Tell us your thoughts about the magazine or what topics you would like to see addressed by emailing us at [email protected], subject line: The Next Five Years Letters To The Editor. Once long ago, an advocate yelled at me because the Georgia Council on Developmental Disabilities (GCDD) was calling to get input into our strategic Five-Year Plan. I was told that we already knew the answers and should not waste her time and others when it was apparent what the needs are and what GCDD GCDD VIEWPOINT oshould do about it.

I shared one of my favorite tales from Alice in Wonderland: when Alice comes upon the Cheshire Cat, she asks about which path she should take? The Cheshire Cat replies, “that depends on where you are How to trying to go.” GCDD spent most of this past fall gathering information from people with developmental Reach Us disabilities, family members, advocates and providers about the destination and the path that we Letters to the Editor want to take over the next five years. Over 225 people attended 11 public forums representing 63 Letters should include the writer’s full name, communities. In addition, over 400 people participated in an online survey. Thank you to all those address, phone number, and may be edited who took time out of their very busy schedules to either attend a forum or complete a survey. for the purpose of clarity­ and space. Council members and staff reviewed those comments and ideas in October and are using them to Contact Our Editor and determine what will be in the next strategic Five-Year Plan. Once the recommendations are ready, Public Information Director: Making a Difference you, the readers of and others will have the opportunity to give us your input into Valerie Meadows Suber whether we are on the right path and working toward the best destination. [email protected] This edition of the magazine will focus on the results of the forums and survey. In addition, we P: 404.657.2122 present our legislative agenda for the upcoming General Assembly featuring the findings of the F: 404.657.2132 recent legislative study committee that discussed inclusive post-secondary education options and or: 2 Peachtree Street, NW Employment First. I know that many of you with older adult family members with disabilities are Suite 26-246 concerned that an Employment First policy will result in your loved one not having the option to go Atlanta, GA 30303-3142 to a day center or workshop. However, we believe the focus of Employment First policy will be most Audio or Large Print Versions: beneficial to students transitioning from high school. Once formal schooling has been completed, For an audio version of Making a Difference, parents of today’s young adults expect their child to work and they hope they have a job that pays at please contact GCDD. A large font version is least minimum wage. available for download at www.gcdd.org. Finally, to support Employment First, GCDD sponsored Take Your Legislator to Work Day. Like the original concept created by the Wisconsin Developmental Disabilities Council, people invited their Subscriptions / Back Issues: legislator to spend the day with them on their job. We have heard wonderful stories and connections Visit us at our website: www.gcdd.org about legislators and individuals. or call us: 404.657.2126. I also want to congratulate Sukie Glick, Dorothy Harris, Nandi Isaac, Heidi Moore, Brenda Liz It is our policy to publish readers’ Muñoz and Madeline Petrone, who were all appointed to GCDD by Governor Nathan Deal. We comments. Contents do not necessarily look forward to working with you. reflect the opinions of GCDD, the editors or state government. Remember that GCDD is here to assist you. Check out our website and join our advocacy network so that you can stay informed. We hope you enjoy reading this magazine and we want Magazine Sponsorship: to hear from you. Let us know your thoughts and comments about the magazine by writing to For sponsorship opportunities contact: [email protected] Devika Rao at 678.384.7836 or [email protected].

Eric E. Jacobson Executive Director, GCDD

WINTER 2016 | GCDD.ORG 3 DD Council executive directors gather at NEWS the Center for Civil and Human Rights in Atlanta to kick off the NACDD Executive Director Leadership Summit.

NACDD CEO Donna Meltzer speaks to attendees.

GCDD Hosts Executive Director Leadership Summit

IN THE NEWS

USDOE Grant to The National Association of Councils on building partnerships with other organizations, Developmental Disabilities (NACDD) hosted they ensure that those organizations or Expand College its annual Executive Director Leadership community stakeholders are also reaching out Access for Summit from Nov. 2 - 4, 2015 in Downtown to people of diverse backgrounds and needs. Atlanta. The gathering of executive directors AIDD’s requirements are in essence forcing us Georgia Students of nationwide and surrounding territory DD to look deeper and to be more culturally and with Intellectual Councils brought together leadership and a linguistically competent in all that we do.” look at the next big focus of developmental The annual meeting of the DD Council Disabilities disabilities. executive directors brings together council The US Department of Education The three-day summit looked into the future leadership for deep and thoughtful discussions (USDOE) awarded Georgia State of the developmental disability field and what on subjects that affect them and their respective University’s School of Public Health Councils should be focusing on as they develop Councils. NACDD also uses the opportunity to a $2.5 million, five-year grant to their five-year state plans. Panels discussed bring key national leaders in for discussion with support a consortium of universities advocacy and community living addressing the executive directors to assist in designing working to improve access to choice for individuals with developmental better tools and supports for their work. disabilities when it comes to housing and what higher education for students with it means for DD Councils and their mission. intellectual disabilities. Aaron Bishop, commissioner of the The Georgia Inclusive Post- Administration on Intellectual and secondary Education Consortium, Developmental Disabilities (AIDD), also based at the school’s Center for attended the summit to emphasize the need for Leadership in Disability (CLD), will diversity in the DD Councils’ state plans. provide organization, community “The demographics are changing so the education, start-up funding, question is ‘how do the Councils work together statewide training and technical with marginalized communities in their state to assistance for colleges and bridge those gaps in service and supports?’ ” said universities seeking to establish Bishop. programs for these students. He cited GCDD’s Real Communities as This is the second round of five-year a shining example of working with other grants from the USDOE, known as marginalized communities and bringing the Model Comprehensive Transition together people with and without disabilities to address issues like food scarcity, poverty, and Postsecondary Programs for GCDD Public Information Director Valerie Students with Intellectual Disabilities education and more. Meadows Suber, AIDD Commissioner NACDD CEO Donna Meltzer added, “It is Aaron Bishop, Mark Johnson, director of (TPSID). The program originated in advocacy for the Shepherd Center and 2010 in response to changes in the important that when DD Councils invest in GCDD Executive Director Eric Jacobson at federal Higher Education Act. their communities through grant funding or the NACDD Leadership Summit in Atlanta.

4 MAKING A DIFFERENCE AROUND GCDD AROUND GCDD Mixed Greens Goes Mobile GCDD’s Real Communities initiative Forsyth food. We hope to reach our neighbors who The Forsyth Farmers’ Market was Farmers’ Market is going mobile. find it difficult to attend our Saturday farmers’ created to address food access issues and The Forsyth Farmers’ Market Farm Truck 912 market due to transportation issues or other to provide all members of Savannah’s will be a mobile market that will bring local barriers,” said Teri Schell, executive director of community with a welcoming, inclusive fruits and vegetables to Savannah neighborhoods the Forsyth Farmers’ Market and community place to purchase regional produce. As that do not provide healthy food options. Farm builder for GCDD Real Communities. a GCDD Real Communities initiative, Truck 912, named after Savannah’s area code, Farm Truck 912 will be set up at community the market in Forsyth Park was created to will both accept and double SNAP/EBT benefits centers and other locations that have already develop a more welcoming neighborhood, and offer health and nutrition opportunities. started to have conversations about health. It is as well as provide opportunities for starting with four stops on three days and will connection and contribution for people “The goal of our mobile market is to with and without disabilities. bring nutritious, locally grown produce to expand to at least seven stops by April of 2016. neighborhoods with the least access to healthy Some of the initial stops will include: For more information on the Forsyth Farmers’ Market Farm Truck 912, visit • Benjamin Van Clark Neighborhood – farmtruck912.org. WW Law Community Center • Eastside/Hitch Village – Department of Children and Family Services Center • West Savannah – Moses Jackson Community Center • Carver Heights – Carver Village

Governor Deal Appoints New Members Governor Nathan Deal appointed 23 people to state boards, including six new members to the Georgia Council on Developmental Disabilities. They include: • Sukie Glick is the youth and social media specialist for disABILITY LINK. She is the co- chair of the Association of Programs for Rural Independent Living Youth Steering Committee and a youth member of the National Council on Independent Living. • Dorothy Harris is the secretary for People First of Georgia and her local People First chapter. She is a member of the Developmental Disabilities Advisory Council of the Department of Behavioral Health and Developmental Disabilities (DBHDD). • Nandi Isaac is the owner of ScanWithNan, a microenterprise that focuses on helping people save memories. She is a Partner in Policymaking for All About Developmental Disabilities and has completed training in peer-to-peer support. Isaac is a member of the Region 2 Quality Improvement Council and the Developmental Disabilities Advisory Council of DBHDD. She is Shoppers can now buy healthy food also a member of the Georgia State University – Center for Leadership in Disability Community from the mobile Forsyth Farmers’ Market Farm Truck 912 in Savannah. Advisory Council. • Heidi Moore is an advocate for children’s welfare reform and a member of the State Advisory Panel for Special Education, the Olmstead Planning Committee and various Medicaid healthcare reform committees. • Brenda Liz Muñoz is a family and diversity fellow for the Georgia Leadership in Education on Neurodevelopmental and Related Disabilities at the Center for Leadership in Disability at Georgia State University. • Madeline Petrone is an advocate for community inclusion for people living with disabilities. She has received services in a group home, host home, day center, sheltered workshops and independent living from providers.

WINTER 2016 | GCDD.ORG 5 Over 400 ONLINE SURVEYS were received from community members identifying the Advocating for 2017 NEEDS and GAPS a Better Georgia By Devika Rao IN SERVICES -2021 available to people with developmental disabilities.

ACCESSIBILITY • ADVOCACY • TheAMERICANS Georgia Council WITHon Developmental Disabilities (GCDD) set out across the State to listen to what changes people with disabilities,

DISABILITIES ACT • BELOVED COMMUNITYtheir families, caregivers • CIVIL and other RIGHTS advocates wanted to see over • COLLECTIVEWhat ACTION is • COMMUNITYthe next five • years DISABILITY in regards to disability services and supports. RIGHTS • ECONOMIC EMPOWERMENTtAs a part of its mission • EDUCATION to bring about their thoughts and concerns regarding the • EMPATHYGCDD’s • EMPLOYMENT • EQUALsocial and policy OPPORTUNITY changes that promote services and supports available to them. opportunities for persons with developmental GCDD engaged various local communities • FAMILY Strategic• FRIENDSHIP • GRASSROOTSdisabilities and their • families, HUMAN GCDD on topics of interest by conducting two- RIGHTS • INCLUSION • INTERDEPENDENCEkicked off its strategic Five-Year • LOVE Plan by • hour public forums in the following cities: Five-Year hosting public forums and gathering input Dalton, Gainesville, Stockbridge, Macon, OLMSTEAD • REAL CAREERS • REALthrough an COMMUNITIES online community survey. • Albany, Columbus, Atlanta, Athens, Plan? In accordance with the Developmental Savannah, Augusta and Atlanta (Spanish). REAL HOMES • REAL INFLUENCEDisabilities • REAL Assistance LEARNING and Bill of Rights • Attendees were asked three questions, REAL SUPPORTSAll national developmental• SOCIAL JUSTICEAct of 2000, • VOTINGGCDD – and all national RIGHTS which sparked in-depth conversations of disability councils are developmental disability councils – is what the next five years should look like for required to develop and implement a • ACCESSIBILITYrequired to develop • ADVOCACY and • AMERICANS WITH Georgians with developmental disabilities. Five-Year State Plan that identifies the DISABILITIESimplement ACT a Five-Year• BELOVED COMMUNITYmost pressing needs of people • withCIVIL RIGHTS1. What are the things in your State Plan that identifies developmental disabilities in the State. community that allow people to • COLLECTIVE ACTION • COMMUNITY • DISABILITY fully participate in school, in the the most pressing needs of The plan, based on extensive community community and in life? What is RIGHTS • ECONOMIC EMPOWERMENTinput, focuses on •several EDUCATION areas of significance, people with developmental working well in your community?1 disabilities in the State. including employment, education and early • EMPATHY • EMPLOYMENT • EQUALintervention services,OPPORTUNITY housing, transportation, 2. What is not working well in your • FAMILY • FRIENDSHIP • GRASSROOTSself-determination and• advocacy,HUMAN health, community? Are there things missing recreation, community-based services that are needed for people to be RIGHTS •What INCLUSION GCDD did to comply: • INTERDEPENDENCEand supports, and other activities. • LOVE • able to fully participate in school, community and in life? What are 11 Public Forums OLMSTEAD • REAL CAREERS • REALPublic COMMUNITIESForums •2 the barriers to full participation? REAL HOMES225+ • Attendees REAL INFLUENCEand • REALSurveys LEARNING • 3. What are your ideas or suggestions 63 Communities GCDD hosted 11 forums across Georgia about how we/your community could REAL SUPPORTS • SOCIAL JUSTICEduring the • months VOTING of August and RIGHTS have more of what is needed for people • ACCESSIBILITY409 Web • SurveysADVOCACY September• AMERICANS to gather public input. WITH Over to be able to fully participate in school, 225 self-advocates with developmental community and life? How could DISABILITIES ACT • BELOVED COMMUNITYdisabilities, family members • andCIVIL friends RIGHTSbarriers to services and/or supports representing over 63 communities shared be reduced or ideally resolved?3 • COLLECTIVE ACTION • COMMUNITY • DISABILITY RIGHTS • ECONOMIC EMPOWERMENT6 MAKING A DIFFERENCE• EDUCATION • EMPATHY • EMPLOYMENT • EQUAL OPPORTUNITY Participants discuss issues for people with developmental disabilities with Executive Director Eric Jacobson at one of the forums in Atlanta.

As a part of its community outreach, ACCESSIBILITY • ADVOCACY • AMERICANS WITH GCDD also collected input via an online survey that asked 11 questions DISABILITIESPUBLIC ACTFORUMS • BELOVED IN COMMUNITYGEORGIA • CIVIL RIGHTS pertaining to access to childcare, respite • COLLECTIVE ACTION • COMMUNITY • DISABILITY care, self-advocacy and integrated activities in the community for people RIGHTSMore • medical ECONOMIC staff EMPOWERMENT • EDUCATION who understand with developmental disabilities. Ten out of the 11 forums • EMPATHYdevelopmental • EMPLOYMENT • EQUAL OPPORTUNITY Over 400 online surveys were received cited lack of employment disabilities from community members identifying • FAMILY • FRIENDSHIP • GRASSROOTSopportunities and • HUMAN the needs and gaps in services available to accessible and affordable people with developmental disabilities. RIGHTS • INCLUSION • INTERDEPENDENCE • LOVE • Dalton housing as barriers Over 40% of survey participants OLMSTEAD • REAL CAREERSto full• participation.REAL COMMUNITIES • identified themselves as family Gainesville members; over 30% as professionals REAL HOMES • REAL INFLUENCE • REAL LEARNING • in the developmental disability field; Athens approximately 13% as people with REAL SUPPORTS • SOCIAL JUSTICE • VOTING RIGHTS disabilities; and over 10% as advocates. • ACCESSIBILITYAtlanta • (Spanish ADVOCACY & English) • AMERICANS WITH DISABILITIES ACTStockbridge • BELOVED COMMUNITY • CIVIL RIGHTS Augusta Attendees were asked • COLLECTIVEHelp for people who ACTION • COMMUNITY • DISABILITY three questions, which don’t know where Macon sparked in-depth RIGHTSto find resources• ECONOMIC EMPOWERMENT • EDUCATION More training for self- conversations of what the • EMPATHY • EMPLOYMENT • EQUAL OPPORTUNITY advocates and parents next five years should look • FAMILYColumbus • FRIENDSHIP • GRASSROOTS • HUMAN like for Georgians with RIGHTS • INCLUSIONMore access • INTERDEPENDENCE • LOVE • developmental disabilities. Savannah OLMSTEAD •to technologyREAL CAREERS • REAL COMMUNITIES • REAL HOMES • REAL INFLUENCEMore • inclusion REAL for LEARNING • The questions, both at the public Albany younger children forums and on the survey, revealed REAL SUPPORTS • SOCIAL JUSTICE • VOTING RIGHTS commonly held views on certain issues, while some emerged as region-specific • ACCESSIBILITY • ADVOCACY • AMERICANS WITH barriers with possible solutions. QUESTIONS REVEALED COMMONLY HELD VIEWS ON DISABILITIESCERTAIN ISSUES, WHILE ACTSOME EMERGED • BELOVED AS REGION- COMMUNITY • CIVIL RIGHTS • SPECIFICCOLLECTIVE BARRIERS WITH POSSIBLE ACTION SOLUTIONS. • COMMUNITY • DISABILITY WINTER 2016 | GCDD.ORG 7 RIGHTS • ECONOMIC EMPOWERMENT • EDUCATION Online Survey Demographics

What is your gender?

17% 82% 1%

Male Female Transgender

GCDD engaged local communities on topics of interest by conducting public forums in Dalton, Gainesville, Stockbridge, Macon, Albany, Columbus, Atlanta, Athens, Savannah, Augusta and Atlanta (Spanish).

Forums in Georgia What category best describes you?

Family 43% Member

Professional 33%

Person with 13% a Disability Source: 2015 Forty people attended the Savannah forum. GCDD E-Survey, 409 participants, 11% September 2015 Advocate

Two or More Races Asian Hispanic or Latino American Indian 65+

Augusta discusses barriers to inclusion. Black 23-45

46-64 1-22

White

What is What age is your race? your child? Athens considers ways to promote inclusion in their community. 8 MAKING A DIFFERENCE There is a pretty What Matters Most advocacy learning opportunities. Echoing Parry’s sentiments, the community noted HIDDEN PART When addressing barriers, 10 out of the 11 a lack of coaching for self-advocates and public forums and the online community of the population that the need for parents to know that they survey highlighted lack of employment had the power to be agents of change. opportunities and accessible and affordable DOESN’T GET housing as impediments to full participation. “My parents would never make it to these [public forums] and it makes me think that ADVOCACY Attendees stressed the need for vocational there is a pretty hidden part of the population training, the need to do away with or has a hard time having that doesn’t get advocacy or has a hard time subminimum wages or even helping having their voices employers THEIR VOICES heard,” Parry added. understand the GCDD Executive benefit of hiring People noted the lack of HEARD. people with Director Eric Jacobson affordable and accessible disabilities to agreed. “That is an make competitive housing, and they wanted excellent point when employment to have a choice of living it comes to advocacy. a reality. independently in their own place [Kelly’s] parents not being able to attend Overwhelmingly, with or without a roommate. a public forum like 57% of those who this one speaks to the participated in the populationACCESSIBILITY whose voices • ADVOCACY • AMERICANS WITH survey identified go unheard and we have to address that as improving transition from school to work DISABILITIES ACT • BELOVED COMMUNITY • CIVIL RIGHTS we start building the next Five-Year Plan.” or living in integrated communities as the • COLLECTIVE ACTION • COMMUNITY • DISABILITY issue most important to enhancing the Additionally, issues such as the lack of quality of life for people with developmental funding to support self-advocacyRIGHTS groups • ECONOMIC EMPOWERMENT • EDUCATION resonated at the public forum in Albany, GA. disabilities in the next five years. • EMPATHY • EMPLOYMENT • EQUAL OPPORTUNITY When it came to housing, people noted Other barriers also came up as topics the lack of affordable and accessible of concern throughout •the State.FAMILY • FRIENDSHIP • GRASSROOTS • HUMAN housing, and they wanted to have a Residents in Augusta, GA said that lack choice of living independently in their of transportation limitsRIGHTS people with • INCLUSION • INTERDEPENDENCE • LOVE • own place with or without a roommate. disabilities to work or manageOLMSTEAD a social • REAL CAREERS • REAL COMMUNITIES • In the online community survey, about life, and that Medicaid doesn’t always 33% of respondents said Georgia needs REAL HOMES • REALOther barriers INFLUENCE also came • REAL LEARNING • to work on renting or owning affordable up as topics of concern housing, but also having the money to What issuesREAL are mostSUPPORTS • SOCIAL JUSTICE • VOTING RIGHTS throughout the State. support people who have their own place. important to• improve?ACCESSIBILITY • ADVOCACY • AMERICANS WITH Advocating on behalf of her brother who has a developmental disability, Kelly Parry, DISABILITIES ACT • BELOVED COMMUNITY • CIVIL RIGHTS a student from Georgia State University, noted the importance of housing. • COLLECTIVE ACTION • COMMUNITY • DISABILITY “Housing is really the issue for me and my RIGHTS • ECONOMIC EMPOWERMENT • EDUCATION Improving Eliminating Increasing Improving Supporting family,” said Parry at the Sept. 30th public transition from waiting• EMPATHY lists paid • EMPLOYMENTfamily people • toEQUAL OPPORTUNITY forum in Atlanta. “My brother is never school to work for services employment supports participate in going to be able to own his own home or or meaningful • FAMILY •in the FRIENDSHIP including • GRASSROOTSmeaningful • HUMAN have a job, so our options are limited. integrated community respite care integrated community community There is also a balancing act between activities RIGHTS • INCLUSION • INTERDEPENDENCEactivities • LOVE • caregivers and us as a family who do not OLMSTEAD • REAL CAREERSduring the• dayREAL COMMUNITIES • have the energy to do what caregivers can.” A number of forum participants expressed 56.8% 53.5%REAL HOMES52.3% • REAL45.2% INFLUENCE40.0% • REAL LEARNING • a strong need for self-advocacy and Source: 2015 GCDD E-Survey, REAL SUPPORTS 409• participants,SOCIAL September JUSTICE 2015 • VOTING RIGHTS

WINTER 2016• | ACCESSIBILITY GCDD.ORG 9 • ADVOCACY • AMERICANS WITH DISABILITIES ACT • BELOVED COMMUNITY • CIVIL RIGHTS What is GCDD doing now that is most helpful? 57% 55% 54% 50% Providing people with Helping bring people Helping students Hosting Disability list and over 3,000 people whom the State information about with and without with disabilities Day at the State has determined need services within six what is happening in disabilities together in get jobs Capitol Georgia and across their communities months,” Talley Wells, director of the Atlanta the country Legal Aid Society Disability Integration Project, said at the Atlanta public forum. Besides the length of the waiting list, 47% 37% 29% 27% community members touched on the Helping self-advocates Including students Offering scholarships Including children process being too complex and the to be leaders in their in post-secondary so individuals and in their schools lives and communities families can attend inequity around waiver eligibility. Like education and clubs so they can speak conferences many things that affect services and up supports, it all comes down to funding.

Source: 2015 GCDD E-Survey, 409 participants, September 2015 “We might try and provide grants to local communities to address issues, but often we have to use local issues as a illustration of what ACCESSIBILITY • ADVOCACY • AMERICANSpay for transportation. This WITH problem was is taking place across the State,” said Jacobson. also an area of concern for people with Solutions DISABILITIES What’sACT • working?BELOVED COMMUNITYdisabilities and their families,• CIVIL especially RIGHTS when crossing county borders. While barriers were noted, GCDD asked both public forum and survey participants • COLLECTIVE ACTION • COMMUNITYOther issues also• includedDISABILITY a need for what ideas could help improve inclusion in doctors to receive more training to RIGHTS • ECONOMIC EMPOWERMENT • EDUCATION the community. work with people with disabilities; • EMPATHY • EMPLOYMENT • EQUALrespite care OPPORTUNITY for families and more. Many suggestions centered on employment, schooling, transportation and housing GCDD also hosted a Spanish public • FAMILY • FRIENDSHIP • GRASSROOTS • HUMAN options. When addressing transportation, forum in Atlanta to better understand ideas like partnering with car services such RIGHTS • INCLUSION • INTERDEPENDENCEthe needs that affect communities• LOVE who • as Uber or other ride-sharing programs may have cultural and language barriers were discussed. OLMSTEAD • REAL CAREERS • REALwhen navigatingCOMMUNITIES the service system. • Advocates also felt REAL HOMESHelping • students REAL with disabilities INFLUENCE get jobs •Many REAL noted that LEARNING dual • that employment language in schools could be enhanced REAL SUPPORTS • SOCIAL JUSTICEor webinars • VOTING and RIGHTS“There are now over 8,000 with transition resources where the people on the developmental • ACCESSIBILITY • ADVOCACY • AMERICANS WITH coaches and helping schools are helping disability waiting list and over students with DISABILITIES ACT • BELOVED COMMUNITYparents with children • CIVIL RIGHTS 3,000 people whom the disabilities get a with disabilities are diploma as opposed • COLLECTIVE ACTION • COMMUNITYworking in local • DISABILITYState has determined need to a certificate so communities. The services within six months.” RIGHTS • ECONOMIC EMPOWERMENT • EDUCATION they can pursue lack of adult services higher education. • EMPATHY • EMPLOYMENT • EQUALor social OPPORTUNITYworkers Expanding Project that speak Spanish SEARCH, which is already in 18 locations • FAMILY • FRIENDSHIP • GRASSROOTScreated barriers • towards HUMAN full inclusion. Hosting Disability Day at the Capitol in Georgia, will also address the transition RIGHTS • INCLUSION • INTERDEPENDENCEThe lack of waivers has • been LOVE an ongoing • from high school to employment issue. advocacy issue for GCDD and the OLMSTEAD • REAL CAREERS • REALUNLOCK COMMUNITIES (formerly known as “Unlock the • Groups suggested faith-based organizations or other community groups get involved to Waiting Lists!” Campaign) during Georgia’s REAL HOMES • REAL INFLUENCE • REAL LEARNING • raise awareness and build more inclusion legislative session. With a waiting list that and advocacy. Community members in REAL SUPPORTS • SOCIAL JUSTICEbarely • moves, VOTING advocating for RIGHTS more waivers Athens, GA also recommended more Partners and more pay for caregivers are major in Policymaking classes to support the • ACCESSIBILITY • ADVOCACY • concernsAMERICANS for the disability community. WITH need for advocacy and training to improve DISABILITIES ACT • BELOVED COMMUNITY“There are now over •8,000 CIVIL people on RIGHTSefforts to affect a strong policy agenda. • COLLECTIVE ACTION • COMMUNITYthe developmental • DISABILITY disability waiting Bringing people together in communities RIGHTS • ECONOMIC EMPOWERMENT10 MAKING • AEDUCATION DIFFERENCE • EMPATHY • EMPLOYMENT • EQUAL OPPORTUNITY There still remains

A HUGE NEED Partners in Policymaking is a national council meeting. Then, a draft plan will program designed to teach people with be developed and reviewed in April, which for transportation, that disabilities and family members the power will be submitted for public comment. people want to go of advocacy to positively change the way After additional feedback, the plan will people with disabilities are supported, be submitted to the Administration on TO WORK, and that viewed, taught, live and work. Intellectual and Developmental Disabilities people do not have very (AIDD) for approval. The Five-Year Plan many options when it (2017-2021) will take effect October 1, 2016. comes to determining Expanding Project SEARCH, “The big takeaway from the public forums which is already in 18 locations is that while we have made progress over who will PROVIDE in Georgia, will also address the the last few years, there still remains a huge services and supports. transition from high school to need for transportation, that people want to go to work, and that people do not employment issue. have very many options when it comes to determining who will provide services and supports,” said Jacobson. “GCDD will To address communication and healthcare try and address these issues along with the barriers that many people with disabilities support of agencies such as Department Forum in Atlanta and their families face, there were calls to of Behavioral Health and Developmental create resources for healthcare providers, to Disabilities, Georgia Vocational train medical students to work with people Rehabilitation Agency, Georgia Department with disabilities and to offer technical of Education and State Legislators.” support for parents and caregivers. The Next Steps Groups suggested faith- The public forums and community surveys were just the beginning of the process to based organizations or create GCDD’s Five-Year Plan for Georgia’s other community groups get developmental disability community. involved to raise awareness GCDD members and staff reviewed the and build more inclusion public forum comments and the survey and advocacy. results and will be discussing goals, objectives and strategies at the January

Creating GCDD’s New Five-Year Plan

Aug/Sep 2015 Aug/Sep 2015 Nov 2015 Jan 2016

START Public Gather Forums & Review Discuss Community Online Community Strategies Input Survey Input & Goals

Oct 2016 Jul 2016 May 2016 Apr 2016

END New Submit Public Develop Plan Takes Final Plan Comment Draft Effect to AIDD on Plan Plan

Advocates share their stories and concerns at one of the public forums in Atlanta in September 2015. WINTER 2016 | GCDD.ORG 11 Looking Forward to the 2016 Legislative Session

By Dawn Alford, GCDD Public Policy Director

As you read this issue, the 2016 Georgia legislative session has already begun. The Georgia Council on Developmental Disabilities (GCDD) is at the Gold Dome on a daily basis working hard alongside policymakers, partners and other allies.

aWe are committed to being there during the formerly called “Unlock the Waiting Lists!” Advocates gathered with GCDD’s session to uphold our mission of bringing For several years, this campaign focused Public Policy Director Dawn Alford about social and policy changes that promote exclusively on reducing Georgia’s Medicaid (seated, far right) at the Georgia opportunities for persons with developmental waiver waiting lists. However, in recent State Capitol for one of the 2015 disabilities and their families to live, years, this coalition focused more broadly on Advocacy Days. learn, work, play and worship in Georgia rebalancing Georgia’s system to shift its long- communities. But as with any organization term supports from institutional to home that engages in legislative advocacy, our work and community-based services (HCBS). to prepare for the 2016 session began even as Therefore, this coalition has decided to drop the last session ended. In particular, we had “the waiting lists” from its name and just go A Quick an especially busy fall ramping up for this by UNLOCK. You will read more about the legislative session. Let me tell you about just a UNLOCK agenda items later in this article. Look at few of the things we have been doing leading GCDD’s up to now. A Busy Fall Season One way in which we prepare 2016 Leading Up to the Session for the legislative season is to Legislative One way in which we prepare for the hear from you, the citizens of Agenda legislative season is to hear from you, the Georgia, about what issues citizens of Georgia, about what issues people people with disabilities and with disabilities and their families are facing. their families are facing. We traveled across the State hosting 11 public forums to hear what you think is working well, what is not working well and Finally, toward the end of the 2015 l Employment First what needs to change to improve the lives legislative session, House Resolution 642 l of people with disabilities. You will hear Inclusive Post- was passed with Chairman Katie Dempsey more about the results of these forums in Secondary Education (R – District 13) as the primary sponsor. the coming months as GCDD will be using Programs It initiated a House study committee on the information to draft our next strategic l UNLOCK “Post-Secondary Education and Employment Five-Year Plan. Suffice it to say that many of l Options for Individuals with Intellectual Children’s Freedom the themes that emerged, such as the need for and Developmental Disabilities.” Chairman Initiative better employment outcomes for people with Dempsey led this study committee and, along l Achieving a Better disabilities, will be reflected in the current with other committee members, held four Life Experience legislative agenda. (ABLE) Act meetings in the fall. We also focused extensively on building The committee heard extensive testimony l The Family Care Act up the membership of and making some from numerous stakeholders including l Intellectual Disabilities changes to our cross-disability coalition in Capital Punishment 12 MAKING A DIFFERENCE We traveled across the State ... to hear what you think is GCDD and Employment First Georgia. If Thanks to support from the Georgia General you haven’t done so, please thank Chairman Assembly, the number of inclusive post- WORKING Dempsey for her leadership and other secondary programs in Georgia has grown what is committee members for all their hard work from one to four. Additionally, the Center WELL, on this committee: Rep. Amy Carter (R – for Leadership in Disability at Georgia State NOT WORKING District 175), Rep. Bubber Epps (R – District University recently received a federal Transition 144), Rep. Valencia Stovall (D – District 74) Programs for Students with Intellectual well and what NEEDS and Rep. Bill Werkheiser (R – District 157). Disabilities grant, which means we can As this issue goes to print, we look forward to anticipate the addition of more programs within TO CHANGE to reading the report of this committee and the the next few years. improve the lives of people recommendations it contains. However, students in inclusive post-secondary with disabilities. 2016 Legislative Agenda programs have very few resources available to them to pay for these programs compared Make Georgia an to what is available to students of traditional Employment First State college programs. For example, IPSE students Employment First means that employment cannot access the HOPE scholarship program. should be the first and preferred option for Without financial support, many qualified all people, regardless of their disability. Under and eager students simply cannot afford the Employment First legislation, employment in life-changing opportunity of inclusive post- the general workforce at or above minimum secondary education. wage is the first and preferred option for all • Increase student access to inclusive working-age citizens with disabilities. post-secondary educational programs by Currently, the Georgia system creates many creating a scholarship to mirror HOPE to barriers for individuals with disabilities to assist students who could not otherwise work. Although the majority of Georgians afford these programs. with developmental disabilities want to work, • Support the sustainability of inclusive only 8% of Georgians with developmental post-secondary educational programs disabilities are currently employed in the in Georgia by doubling the legislative 1 community. Under an Employment First funding from $200,000 to $400,000. The policy, state agencies will need to re-align their FY 2017 ASK for new funding: $200,000. policies and funding to prioritize employment for all working-age Georgians with disabilities. UNLOCK (formerly “Unlock Helping students with disabilities pay for post-secondary education • Support legislation that will make Georgia the Waiting Lists!”) programs such as the one shown an Employment First state. GCDD is proud to support UNLOCK, above at Kennesaw State University formerly known as “Unlock the Waiting Support Students to Attend is a GCDD legislative priority in 2016. Lists!” The UNLOCK campaign advocates Dr. Ibrahim Elsawy (second from left) Inclusive Post-Secondary with Georgians with disabilities so they and is pictured with the first graduates. Education Programs in GA their families can live full lives and contribute Inclusive post-secondary education (IPSE) to Georgia communities and its economy. We provides opportunities for students with believe Georgia must rebalance its system of REFERENCES: intellectual and developmental disabilities to long-term services and supports, so that fewer 1. National Core Indicators 2013-2014. access higher education. This education prepares dollars are spent on institutional care and National Association of State Directors of them to live increasingly independent lives and more dollars are invested into HCBS services. Developmental Disabilities Services and Human Services Research Institute. pursue careers of their choice. We Need More DD Waivers www.nationalcoreindicators.org/charts/ Individuals with intellectual and developmental Out of the several Medicaid waivers that 2. Migliore, A., Butterworth, J., & Hart, D. (2009). disabilities who receive post-secondary education Georgia offers to those who qualify for Postsecondary Education and Employment Outcomes for Youth with Intellectual are more likely to find paid employment than this level of care, the New Options Waiver Disabilities. Think College Fast Facts. No 1. those who don’t, and their earnings are 73% (NOW) and the Comprehensive Supports www.thinkcollege.net/publications/fast-facts higher than peers who do not receive post- Waiver Program (COMP) have by far 3. See Atkins v. Virginia, 536 U.S. 304 (2002) secondary education.2 Georgia’s longest waiting list. There are (see page 15) over 8,000 individuals with developmental

WINTER 2016 | GCDD.ORG 13 disabilities on this waiting list. These individuals and their families are desperately Georgia is the only one of hanging on and need Georgia to throw them the 50 states that requires a a lifeline. person to prove “beyond a • Fund at least 1,000 NOW/COMP reasonable doubt” that they waivers to reduce Georgia’s longest have intellectual disabilities in waiting list and allow more individuals to capital punishment cases. begin to receive services: $16,486,250. Address the ICWP Rate Disparity The Independent Care Waiver Program The Achieving a Better Life (ICWP) provides vital assistance to people Experience (ABLE) Act with significant physical disabilities and An ABLE account is a tax advantaged savings traumatic brain injury to help them with account that will allow people with disabilities daily tasks such as toileting, bathing, to save money without putting their benefits dressing, meals and housekeeping. The in jeopardy. It is limited to individuals with Expanding Project SEARCH’s high Medicaid reimbursement rate is significantly significant disabilities who became disabled school to work transition program is lower than all the other Georgia Medicaid an important part of the Employment before age 26 and must be spent on certain First legislative agenda. waivers making it extremely difficult to find qualified expenses. Although the federal qualified caregivers. By the time home health legislation that enables these accounts was agencies take their cut, caregivers often are passed by Congress and signed into law in paid only $8-9/hour. 2014, states must pass their own bills to • Increase the ICWP’s Personal Support establish ABLE programs for their residents. rate to $20/hour to be consistent with We anticipate multiple ABLE state bills being other Georgia waivers. We recommend filed during this session. phasing in this amount with an increase • Support legislation that would establish for FY 2017 of $3/hour: $7,975,490. a Georgia ABLE program for Georgia residents. Support Georgians Who Many Georgians balance Care for Their Families: their work lives with caring The Family Care Act for their families. Many Georgians balance their work lives with Changing the legal standard of proof caring for their families. The Family Care Act for proving intellectual disabilities in Children’s Freedom would enable Georgians who have earned capital punishment cases in Georgia is sick leave to use up to five days of that leave also a priority for GCDD in the session. Initiative: Bring Georgia’s to care for sick members of their immediate Children Home family. The Family Care Act does not add any There are a number of school-age children additional sick days or require employers to living in nursing facilities or intermediate care provide them; it only allows Georgians to use facilities. They are in facilities simply because the sick days they’ve already earned to care for they have a disability and need care despite the family members. fact that it is completely possible to care for • Support the Family Care Act. them in the community. Georgia needs to shut Change the Standard to the front door to these facilities and ensure every child has a permanent loving home. Prove Intellectual Disabilities in Capital Punishment Cases • Provide funding for all of the young Georgians with disabilities under the age In 2002, the US Supreme Court said it is of 22 currently living in facilities to move wrong to execute a person with intellectual into permanent loving homes and have the disabilities because it violates the Eighth Supporting Georgians who care for their care they need. Amendment’s ban on cruel and unusual families by letting them use sick leave for that reason is another priority. 14 MAKING A DIFFERENCE punishment.3 But in Georgia, it is extremely • The creation of the Phillip Payne Personal difficult for an individual to prove in court Assistance Program, a sliding fee scale that they have intellectual disabilities. Georgia program for workers with disabilities to is the only one of the 50 states that requires a pay a cost share that would allow them person to prove “beyond a reasonable doubt” to access Personal Assistant Services to that they have intellectual disabilities in capital maintain their independence. punishment cases. • The creation of PeachWork, a program • Change the legal standard of proof for allowing workers with disabilities to pay proving intellectual disabilities in the a premium in order to receive medical Official Code of Georgia Annotated coverage through Medicaid. Workers on (OCGA) to “preponderance of the this program could earn a modest income evidence,” which is the standard used in without putting their Medicaid health most other states. insurance at risk. The previous items are the Mark your Calendars focus of our legislative agenda and Join Us for 2016 for 2016! In addition, GCDD is Advocacy at the Capitol! UNLOCK remains an important part of also proud to support … the legislative agenda as more waivers No matter how robust our legislative agenda, mean more services available to • Changes to Georgia’s high school diploma we cannot be successful in our efforts people with developmental disabilities system that will give more students with without YOU – the voices of the people and their families. disabilities the opportunity to obtain with disabilities, their families, and other diplomas and access further career and allies. We will be holding a series of advocacy educational opportunities. days along with our annual Disability Day • The creation of an Elder and Disabled at the Capitol. Each advocacy day will Abuser Registry in Georgia that would have training, visits with legislators and Receive the latest allow employers of direct care workers networking with others in our community. information throughout to have a better way to screen potential Register TODAY by going to gcdd.org/ the session: employees and may deter abusers. advocacy. You don’t want to miss it!

2016 Advocacy at the Capitol!

We Need More DD (NOW/COMP) Employment First Day Waivers Day Thursday, February 11 Wednesday, January 20 (sponsored by GCDD, UNLOCK and the (sponsored by GCDD and UNLOCK) Employment First Coalition) Independent Care Waiver Program Please go to www.gcdd.org, (ICWP) Raise the Rate Day 18th Annual DISABILITY scroll to the bottom of our Wednesday, January 27 homepage and click on “Join (sponsored by GCDD and UNLOCK) DAY AT THE CAPITOL* Thursday, February 18 our Advocacy Team!” and follow Inclusive Post-Secondary Education (IPSE) Day the instructions. You will have Tuesday, February 2 ABLE (Achieving a Better Life) Act the opportunity to select your Coalition Day (sponsored by GCDD, UNLOCK and the subscription preferences. Be Wednesday, February 24 Georgia Inclusive Post-Secondary Education sure that you sign up to receive Consortium) (sponsored by GCDD, AADD and the Georgia ABLE Coalition) our “Advocacy & Policy Alerts” Intellectual Disability and “Unlock the Waiting Lists! and the Death Penalty Wildcard Day! Tuesday, February 9 End-of-Session Advocacy Alerts.” This will also allow you Tuesday, March 1 (sponsored by GCDD, PAPE Coalition and receive our legislative newsletter, (sponsored by GCDD and UNLOCK) GFADP) “Public Policy for the People” * Disability Day registration information is on pages 16-17. that comes out every two weeks during session. WINTER 2016 | GCDD.ORG 15 The Disability VOTE – Feel the Power! Register now to participate in GCDD’s 18th Annual Disability Day at the Capitol. More than one million Georgians have some type of disability and approximately 652,000 are voting-age. Exercise your right to vote this election year. Your vote, and your voice, are critical to the political decision- making process. Come to LIBERTY PLAZA and join advocates, meet with state legislators, hear Governor Nathan Deal speak, make your voice heard and your VOTE COUNT.

18TH ANNUAL DISABILITY DAY AT THE CAPITOL THURSDAY, FEBRUARY 18, 2016, 9 AM - 2 PM

JOIN US ON LIBERTY PLAZA SCHEDULE OVERVIEW

9 AM – 11 AM ATTENDEE FORM:

T-Shirt distribution, activities First Name: ______Last Name:______and exhibits at the Georgia Freight Depot before the rally - Organization (if applicable): ______first come, first served. School (if applicable):______

11 AM – 12:30 PM County (required field): ______Rally program including Gov. City/State/Zip: ______Nathan Deal in Liberty Plaza, Day Time Phone (required field): ______Capitol Avenue & MLK, Jr. Dr. Email Address: ______

12:30 PM – 2 PM Alternate Contact Name: ______Box lunch and exhibits at the Georgia Freight Depot - first Alternate Phone: ______come, first served. Please Confirm Number of Attendees: For more information, Attendees 10 and under: _____ Confirmed number of attendees visit www.gcdd.org or Group Size 11 through 50 (ONLY): _____ Confirmed number of attendees call 1-888-ASK-GCDD Group Size 51 and over (ONLY) _____ Confirmed number of attendees

Please complete by Feb. 5 and mail or fax with attention to Disability Day 2016. Georgia Council on Developmental Disabilities Fax: 404.657.2132 2016 Disability Day Registration Call: 404.657.2121 2 Peachtree Street NW, Suite 26-246, Atlanta, GA 30303 to learn more.

Participating in You may also register ONLINE at http://bit.ly/1OLf9hk Disability Day 2016? Groups of 20 or more MUST register online. Tag your photo with If you are unable to register online and need support to register by phone, #GCDDannualDisabilityDay call 404.657.2121. on Facebook & Twitter! 16 MAKING A DIFFERENCE Disability Day Sponsorship Form Your sponsorship will support one of the largest statewide events that provide an opportunity for advocates to unite in support of legislation that will promote the independence, inclusion, productivity and self-determination of people with disabilities. Each year, thousands gather at the Capitol to meet with lawmakers, celebrate growth in community and reignite the bonds of friendship. The success of the event depends on sponsors like you. Please let us know of your commitment no later than February 5, so that you may receive full recognition of your support as described below. (Information received after this date does not guarantee your organization’s placement on any printed materials.)

Yes! My organization will co-sponsor Disability Day 2016 in the amount of: ______$5,000: Full-page ad in Making a Difference magazine, logo on banner and GCDD website, name on program, exhibit space.

______$4,000: Half-page ad in Making a Difference magazine, logo on banner and GCDD website, name on program, exhibit space. YOUR VOICE... ______$2,500: Quarter-page ad, logo on banner and GCDD website, name on program, exhibit space. YOUR CHOICE... ______$1,500: logo on banner and GCDD website, name on program, exhibit space.

______$600: logo on banner and GCDD website, name on program. YOUR VOTE!

______$200: Name on program and GCDD website. GET READY FOR [___] Yes, my check is enclosed. (Payable to Georgia Council on Developmental Disabilities) DISABILITY DAY [___] Yes, please invoice me for the amount selected. [___] Sorry, I am unable to sponsor this year. 2016! Will you or your organization’s staff plan on attending this event? Yes ___ No ___ Please provide an estimated count for lunch ____ and/or number of T-shirts ____ (Sponsors $600 and over may reserve t-shirts for each member of their organization registered to attend Disability Day at the Capitol by emailing [email protected] with the number of t-shirts and sizes for advance shipment.) [PLEASE WRITE CLEARLY]

Contact Name: ______Title: ______

Organization Name (Exactly as you want it to appear on event materials):

______

Address: ______

City:______State: _____ Zip: ______Phone: ______Register ONLINE at Email: ______http://bit.ly/1OLf9hk Fax: 404.657.2132 Call: 404.657.2121 Please complete form by Feb. 5 and mail or fax with attention Disability Day 2016 by February 5, 2016! to learn more. Georgia Council on Developmental Disabilities 2 Peachtree Street NW, Suite 26-246, Atlanta, GA 30303 Fax: 404.657.2132

You may also sign up as a sponsor by contacting: Kim Person at 404.657.2130 or email [email protected]

WINTER 2016 | GCDD.ORG 17 People with Disabilities Take Georgia Legislators to Work By Devika Rao

“It was important for me to meet people with disabilities in the employment environment and see what impact they have in the workplace,” said Rep. Scot Turner (R – Holly Springs), who has a son on the autism spectrum and also is a longtime advocate for people with disabilities.

Rep. Turner participated in Take Your Legislator to Work Day (TYLTWD), hosted “It’s not just someone talking iby Employment First Georgia (EFG) and supported by the Georgia Council on about it, it’s not just statistics Developmental Disabilities (GCDD). The on a page. Legislators are initiative, held for the first time in the State, actually going to work with was an exercise to bring together legislators someone with a disability to with people with developmental disabilities see how it works.” and employers who are supporting this effort in their districts. “The idea behind TYLTWD is to allow Rep. Turner went to Canton-based Sweetwater Georgia state legislators to meet people with Growers, a hydroponic farm growing live basil disabilities at their place of work and share in and micro-greens throughout the US and their workday experiences,” said D’Arcy Robb, Hall County Project SEARCH intern Canada. He met with employee Chad Roberts co-coordinator of Employment First Georgia. Hannah Peterson with Sens. Butch who has become invaluable to the company’s Miller (left) and John Wilkinson during Georgia’s TYLTWD kicked off in October everyday operations. their Take Your Legislator to Work 2015 to commemorate National Disability “Chad plays an important role in the day-to- Day visit. Employment Awareness Month (NDEAM). day functionality of the company. And when The objective of this campaign is to raise you look at Chad and his success, you see the awareness about the benefits of hiring strong family, employer and caregiver support. individuals with disabilities and the belief that It’s a team effort to make Employment First a employment and successful careers should reality for people with disabilities,” he said. be the expected and preferred outcomes of all publicly funded services for individuals Take Your Legislator with disabilities, i.e., Employment First. to Work Day “It’s not just someone talking about it, it’s not The efforts of TYLTWD started with the just statistics on a page. Legislators are actually Employment First Georgia Coalition, a going to work with someone with a disability 300-strong group of advocates including to see how it works,” said Robb. people with disabilities, family members, The goal of Take Your Legislator to Work service providers and advocates who believe Day is to ask employees with disabilities to that all people with disabilities have the Quron Dixon, a graduate of Fulton invite their legislators to visit their workplace ability to work and that Georgia needs an County Schools Learning Internship for to demonstrate first-hand the power of Employment First policy. Future Employment (L.I.F.E.) greets Sen. Donzella James at his place of community-integrated employment for people The coalition put out a call to Employment employment, Restaurant Associates. with disabilities by showcasing their skills and First Georgia members and the general Dixon has been employed for three talents in a work environment. public looking for Georgians with disabilities years and Chef Tom noted he was one of his best employees. 18 MAKING A DIFFERENCE SHOWING decision-makers the that work in the communities that they “We want our legislators to see the value and of love. Then they were encouraged to sign contribution people with disabilities make in IMPACT up for TYLTWD. the workplace,” said Robb. COMPETITIVE “With EFG, we’re going to them with a Sens. John Wilkinson (R - District 50) and and meaningful problem that the State doesn’t do enough to Butch Miller (R - District 49) visited the help people with disabilities go to work,” said Project SEARCH site in Hall County where employment was the Robb. “But we’re also coming to them with a they met a number of employees, including solution and saying ‘People with disabilities Adrianna Becerra. CHANCE OF can work. Here is your constituent working Becerra, 19, is a mail room tech at Northeast A LIFETIME. and now we need to make sure that all Georgia Medical Center in Gainesville, GA Georgians are able to do that.’ ” through Project SEARCH. She organizes and And the legislative response has been distributes mail for the hospital, which has overwhelmingly positive. At the time of this allowed her to become stronger in skills such writing, EFG had 11 legislative visits that were as memorization and socialization. completed and five more scheduled while three were pending and 24 more were being arranged. If all these schedules align, over 40 David Stockstill (second from left) legislators will have visited their constituents started work at Olson Architects with disabilities at work. as an assistant. Stockstill had Along with Turner, many other connections worked hard at Southern Regional Technical College mastering the between legislators, employees and trade of drafting. Rep. Darlene businesses were formed to drive home the Taylor (center) joined him as a part message of Employment First and the need of Take Your Legislator to Work Day, for competitive employment for people sponsored by GCDD in collaboration with disabilities. with EFG. Olson Architects has given him the opportunity to try out Georgia House of Representatives Majority his skills and learn from the experts. Leader Jon G. Burn (R – Newington) participated in TYLTWD in Effingham County at Edwards Interiors Aerospace, a 200-employee company that makes interiors “There is a lot to remember in this job for Gulf Stream airplanes. and a lot more to it than most people realize,” she said. “I’m very social so I really like delivering the mail and meeting new people. Working in the mail room has “With EFG, we’re going pushed me to get better at memorizing, be to them with a problem at work every day and on time.” that the State doesn’t do Showing decision-makers the impact of enough to help people with competitive and meaningful employment disabilities go to work.” was the chance of a lifetime. “I liked the fact that I got to show [the legislators] that people with disabilities can Rep. Burn got to meet Lindsey Kussow, work just like anybody else and shouldn’t Rep. Jon Burns visited Lindsey who is helping modernize the company’s be sheltered,” said Becerra. “It’s important Kussow, who works at Edwards purchase orders because the company had that they know we can do the same things Interiors Aerospace in Springfield. rooms full of crates of paper taking up other people can do and we can live Burns was impressed not only by significant real estate to store these records. independent lives.” Kussow’s skills in organizing files, but also by the growth she witnessed Kussow helped create a digital record-keeping After spending a day at the job site, Wilkinson system, which helped save the company a lot in herself after getting her job. She said his biggest takeaway was that, “you could changed from a shy young lady to an of money and improve organization. count on them. The employers were boasting outgoing, confident woman ready to take on any task assigned to her. WINTER 2016 | GCDD.ORG 19 about the attendance record, How It All Works Together attention to detail and positive At the same time, other federal legislation attitude – all things that make a huge and mandates like the Workforce Innovation difference in the workplace for everyone. and Opportunity Act (WIOA), the Achieving These are great things to employers.” a Better Life Experience (ABLE) Act and Why It’s Important Now the Home and Community-Based Settings (HCBS) Rule from the Centers for Medicare It has been about eight years since and Medicaid Services – all which were passed advocates began actively seeking an down federally in 2014 – are setting the tone Employment First policy for the State CURRENTLY, 32 OUT OF of integrated and inclusive communities, which of Georgia. In 2015, the House of THE 50 STATES HAVE AN includes Employment First practices in a state. Representatives formed the Employment EMPLOYMENT FIRST POLICY. First and Post-Secondary Education Study WIOA and the HCBS Rule are two really big Committee to look at these issues. things on the disability landscape happening right now for people with disabilities. “Our hope is that out of this committee The HCBS rule declared that people with we will get a piece of legislation for the disabilities should receive services in integrated 2016 session that would make Georgia an and inclusive communities not only for Employment First state,” said Robb. employment, but also in transportation, What does being an Employment First state education, housing and other areas. mean? Upon becoming law, state agencies would have to reprioritize their policies and funding so employment becomes a priority Here in Georgia, it is a option for every working age Georgian with a disability, regardless of the significance of their priority to want everyone to disability. But it also includes a culture change. look at employment as the “Many of our state systems prioritize segre- first option for all working gated services for people with disabilities and age people with disabilities. there are mindsets that are institutionalized about what people can and can’t do. So it’s a process. I would say I absolutely want “The rule says that it is not okay for people [legislators] to support our Employment with disabilities or people who are aging or Garrett Chason (back, left), First legislation but even more so than that, people who get any other kind of services to who works at Publix, rode in the for the long haul I want them to support an Thomasville Christmas parade with be in an institution and be isolated. When Rep. Amy Carter, Rep. Darlene Taylor Employment First culture,” said Robb. it comes to employment, HCBS as well as and Sen. Dean Burke. Currently, 32 out of the 50 states have an WIOA are very supportive of Employment Employment First policy. First,” said Robb. Here in Georgia, it is a priority to want everyone to look at employment as the Rep. Bob Bryant (center) visited BJ first option for all working age people with Clark (left) and Michael Burris (right) disabilities. All agencies work together but at the office of the Chatham County approach it from a different angle. The Clerk of Superior Court to see how they question behind pushing Employment First streamline the process of digitizing is how to get more people with disabilities documents. Chatham County Clerk of Superior Court Dan Massey recognized into the community and how to get them the opportunity for these two very employed just like anybody else. capable men to gain meaningful employment. Both Rep. Bryant and Advocacy Massey emphasized the importance Like any policy efforts, advocacy remains the of change starting at the local level, strongest way for the community to engage creating a working model for others. with the legislators and other decision-makers on what issues matter most.

20 MAKING A DIFFERENCE State Rep. Mickey Stephens (center) visited Memorial University Medical Center in Savannah, GA and met It is important to Jazzmine Smith (left) and Shyeeta realize the Kelly (right), two women who have overcome obstacles to create their own success. Rep. Stephens, who taught POTENTIAL of special education for many years prior to becoming a state representative, ALL PEOPLE agreed and voiced his fervent support We should not dwell for supporting employment for people with disabilities. on disabilities, but Memorial is a prime example of how we all benefit as a whole when people FOCUS ON are given the opportunity to make a contribution, and the Coastal Center for and Developmental Services is proud to have ABILITIES been a part of their success! their contributions.

When it comes to Employment First, “there Achieving a Better Life Experience (ABLE) Act are a myriad of little pieces that could be bill in the 2016 Georgia General Assembly. changed. We need to take things like Project What an Employment First Georgia will look SEARCH, which has been a huge success, like will depend a lot on the legislative session to a bigger stage. We need to be able to do and the voice of the advocates. But through customized employment and discovery. And the TYLTWD initiative, legislators who have some of these things are in the beginning met employees with disabilities have taken stages. We really want it to kick start all of away the most important message of all. that and give it a centerpiece for all of these “It is important to realize the potential of all best employment practices in Georgia. And people,” said Wilkinson. “We should not dwell mostly, the advocates need to keep pushing it on disabilities, but focus on abilities and their forward,” said Robb. contributions.” Sen. Bruce Broadrick visited Brett During the legislative session, GCDD and Wable at Shaw Industries in Dalton, Thanks to all our legislators who took EFG will be hosting Advocacy Day for GA. Wable is a housekeeper for Plant Employment First on Feb. 11, 2016. time out of their busy schedules to UC and his responsibilities include emptying the recycling containers Legislators welcome advocates and suggest that participate in GCDD’s TYLTWD. For a complete list of the participants, throughout the plant, bailing cardboard getting involved and building a relationship and plastic, running the sweeper and with them is an important step in advocating. see page 31 or visit our web page cleaning up damaged goods. “Tell us what is going on, be specific on what for the most up-to-date information: is lacking and come with potential ideas,” gcdd.org/public-policy/take-your- said Turner, who will also be sponsoring the legislator-to-work-day-a-success.html

Rep. Bill Hitchens visited Billy Behrens, who has worked at a leading manufacturer in Savannah for over two years. When his job required him Sen. Fran Millar, along with Rep. Scot Turner, Rep. Lee Hawkins and Sen. Renee to use a computer, he took on the Unterman announced their intentions to file legislation in support of the ABLE Act in challenge without hesitation. Though Georgia on Dec. 3 at the Georgia State Capitol. Be sure to follow GCDD updates during he had no computer skills in the the legislative session and join us for the ABLE Act Advocacy Day. beginning, Behrens closed out over 73,000 work orders for his company and won nine performance awards! WINTER 2016 | GCDD.ORG 21 I knew she needed a BETTER Growing Up with a Sister with PLACE, a Developmental Disabilities place to have some By Sarah Shay FREEDOM like ANY YOUNG ADULT would want. My sister Melissa is three years older than me, but you could never tell. At five-feet-tall and under 100 pounds, I’ve always felt like the older one. That is mostly because Melissa was born with Down syndrome and deafness. I grew up faster than she did in every way possible – potty- PERSPECTIVES mtraining, eating, talking, walking and going to school. As we both grew into our pre-teens and from the harsh words and deeds of the world. teens, the different paths our lives were going On the other, I was so tired. Melissa was to take became more apparent. My parents really hard to live with a lot of the time and referred me to as their “golden child.” And the stress it put on my family was breaking us even at that early age, I knew it had a double apart. I didn’t want her living with us, but I meaning. Not only was I “perfect” in their felt guilty having those thoughts. I knew she eyes, but I had to act the part as well. I was needed a better place, a place to have some an honor student, active in band and foreign freedom like any young adult would want. language, always striving to do my best – But then weren’t we abandoning her, like never allowing myself to give up or fail. so many other kids with developmental At the same time, Melissa, the tiny, cabbage- disabilities I’d seen dumped at schools and patch-faced baby, had grown up with a wild homes over the years? streak and she simply became more than my A divorce and a move would make Melissa’s parents could handle. This began a long and future clear. Now alone, my mother had no stressful path of finding her good schools and choice but to put Melissa into a group home. respite care programs. There was no perfect I still try to avoid saying the word group place or perfect formula. home. It makes me feel like we failed her somehow. But thankfully she thrived there – going to school everyday, taking care of her On one hand, I wanted to basic needs, going on outings and interacting protect her, and every other with people of different ages. child with a developmental Would Melissa’s story be different if she was disability, from the harsh words born now? Definitely. For one, the Internet and deeds of the world. has totally changed how we communicate. SARAH SHAY and her sister Melissa. Shay graduated with A parent who has a child with disabilities honors from the University of now has many resources readily available Alabama and is now a writer in At special needs schools, they didn’t have a to them, including the ability to reach Atlanta, GA. sign language interpreter. At deaf schools, the out to other parents. Secondly, I think students would make fun of her for having the social mindset has changed so that Down syndrome. Some schools would lock people with developmental disabilities her in her room at night so she couldn’t are seen as part of their community – wander around and it became apparent that going to school, working and living with other schools were doing things even worse. their families or even on their own. That was a very hard time in my life. On Even though my sister’s story is different, we one hand, I wanted to protect her, and every still have our happy ending, which is all I other child with a developmental disability, could ever hope for.

22 MAKING A DIFFERENCE I couldn’t IMAGINE how Becoming a anyone could face Sibling Advocate such PAIN AND By Nick Perry ADVERSITY with a smile the way he does. If he could, It was Friday, July 13, 1984. That was the day I became a big brother. SO COULD I. With the birth of my brother Jarvis, came my expectations of hanging out, playing sports, fighting, goofing off, going to school and growing up alongside my new best friend. Some of these expectations would come to pass, but others would remain fantasy. PERSPECTIVES

My brother was diagnosed with cerebral palsy strength. It’s ironic how my little brother is the iand an intellectual disability. As the realization emotional support that I always needed. He is that he was not a typically developing child always there to listen, but never judge. He taught dawned on me, the trajectory of my life changed. me how to love unconditionally, how to endure My carefree nature was slowly replaced by a life’s challenges and how to be responsible. But feeling of responsibility. most of all, he taught me how to be a man. I thought of college and career options at a very As adults, Jarvis and I continue to support one early age. I thought that I had to be successful another. Our brotherhood has led me to choose enough to support both my brother and myself a career path that allows me to be of service to for the duration of our lives. Unfortunately, others with developmental disabilities and their waivers and supports were never explained to me. loved ones. I was a gifted student and star athlete. I tried not Of particular interest are the challenges to ever cause trouble or create more of a burden faced by many siblings of individuals with for my family; moreover, I wanted to make disabilities. Our voices often go unheard, our them proud. I was chasing perfection. Being struggles unseen. That is what motivated me captain of an undefeated soccer team, graduating to get involved with Sibshops, the Georgia high school with honors, receiving academic Sibling Connection and the Sibling Leadership scholarships and being gainfully employed since Network. We siblings face many of the same the age of 15, all seemed to go unnoticed. issues as our parents in addition to those that Thus, all of my struggles were turned inward specifically affect us. Beyond feeling alone, guilty until the day I suddenly found myself sitting and exhausted from the demands of caregiving, with a gun pressed against my temple. There was we may also experience embarrassment, no note. I went down my list mentally saying resentment and pressure to achieve. Since the my good-byes when my mind inevitably came to sibling relationship is generally the longest my brother. “What would happen to him after relationship of one’s life, it is important for NICK PERRY and his brother Jarvis. Perry is the former public our mother was gone? Who would be there with legislators, agency leaders and most importantly policy specialist and sibling him? Who would fight for him? What quality of parents to give more consideration to the role coordinator for the Georgia Council life would he have?” I thought. that we play. on Developmental Disabilities. These questions gave me pause, and ultimately Often, we become advocates right alongside our saved my life. I couldn’t imagine how anyone siblings. Decisions that affect them affect our For sibling support programs, visit: could face such pain and adversity with a smile lives as well. We have a right to our own lives Sibling Support Project (Sibshops): the way he does. If he could, so could I. independent of our siblings with disabilities, www.siblingsupport.org I began to realize that we would always be and we also have the right to be included in discussions and decision-making processes that Georgia Sibling Connection: able to rely on one another because we’re tiny.cc/GeorgiaSiblingConnection complementary. I have exceptional physical impact our families. As the popular slogan goes – and mental faculties, and he has uncanny inner Nothing About Us Without Us! Sibling Leadership Network: siblingleadership.org/

WINTER 2016 | GCDD.ORG 23 EXPERT UPDATE

OVER 90% of the respondents said Sibshops had a Sibshops: Celebrations of the POSITIVE Contributions Made by EFFECT Brothers and Sisters on the FEELINGS By Don Meyer

THEY HAD What are Sibshops? For the adults who run them and for the agencies for their siblings. that sponsor them, Sibshops are evidence of the loving concern for the family member who will have the longest-lasting relationship with a EXPERT UPDATE person who has a disability. wHowever, for the kids who attend them, sponsor one Sibshop for all the brothers and Sibshops are pedal-to-the-metal events where sisters in a given community. they meet other siblings, or sibs, (usually for What is the impact of Sibshops? the first time), have fun, laugh, talk about According to a University of Washington the good and not-so-good parts of having a survey of adults who attended Sibshops sib with special needs. They play some great as kids, over 90% of the respondents said games, learn about the services their brothers Sibshops had a positive effect on the feelings and sisters receive and have more fun. More they had for their siblings. Sibshops taught than 400 Sibshops have been established in coping strategies to over two-thirds of almost every state and in eight countries. respondents; three-fourths reported that Are Sibshops a form of therapy? Sibshops affected their adult lives; and 94% Sibshops may be “therapeutic” for kids to said they would recommend Sibshops to DON MEYER is the director of attend, but they are not therapy. Sibshops others. The authors concluded: “The positive the Sibling Support Project and is takes a wellness perspective. They’re a effects of the Sibshop program are not only best known for creating Sibshops, celebration of the many lifelong contributions apparent, but enduring.” programs for young brothers and made by brothers and sisters of people with Are there Sibshops in Georgia? sisters of kids with special needs. special health and developmental needs. Yes! Here are two: Who attends Sibshops? Lekotek of Georgia Sibshop, Helene Prokesch How can I start a Sibshop Sibs, of course! Most Sibshops are for Lekotek of Georgia, Atlanta, GA in my community? siblings of kids with developmental concerns. 404.633.3430, [email protected] Increasingly, Sibshops are being offered Visit the Sibling Support Project’s Georgia Sensory Assistance Project for brothers and sisters of kids with health website or call us for more info: Sibshops, Jennifer Garrett concerns and we’re beginning to see Sibshops www.siblingsupport.org University of Georgia College of Education emerge for sibs of kids with mental health 570 Aderhold Hall, Athens, GA [email protected] concerns. While Sibshops were developed for 678.923.4185, [email protected] 206.297.6368 sibs 8-to-13-years-old, they are being offered gsap.coe.uga.edu for sibs as young as six and for teens as well. The Georgia Sensory Assistance Project, Another expert resource Who sponsors Sibshops? based out of the University of Georgia, from Don Meyer: A wide range of agencies: early intervention hosts Sibshops for children ages 7-12 and centers, school districts, children’s hospitals, The Sibling Survival Teen Mentors ages 13-21. These Sibshops local Arc chapters, Easter Seals programs, Guide: Indispensable are designed for brothers and sisters of autism societies, Down syndrome groups, Information for individuals with deaf-blindness as well as developmental disabilities councils, Jewish Brothers and Sisters other disabilities. Sibshops are held three or community centers, churches, parks and of Adults with Disabilities more times per year in the Atlanta area and recreation programs, etc. Often, local agencies (2014, Woodbine House) other areas of Georgia. work with other like-minded agencies to co- www.woodbinehouse.com/main.asp? product_id=978-1-60613-013-1&.asp 24 MAKING A DIFFERENCE Siblings play an IMPORTANT Supporting Siblings ROLE in the lives of of People those with developmental with Disabilities disabilities, yet our By Katie Arnold PERSPECTIVE IS OFTEN The sibling relationship is the longest relationship of most people’s lives and the peer nature of our relationships make us OVERLOOKED. well-suited to support the self-determination of our brothers and sisters with disabilities.

Siblings play an important role in the lives website also has a wealth of information tof those with developmental disabilities, yet for people to use across the lifespan. our perspective is often overlooked. There 2. Research: The SLN is advocating for has been a growing awareness of the unique more and better research on the sibling perspective and needs of siblings across the experience and is working to get it into the lifespan. The Sibling Leadership Network hands of siblings and sibling supporters (SLN) has been working to build momentum so they can advocate for their needs. A of the sibling movement across the country. National Sibling Survey was recently One of the hallmarks of the SLN is that conducted to better understand the needs we are listening to and learning from self- and experiences of siblings from their advocates in the movement. People with perspective as well as their siblings with disabilities are an important part of our disabilities, parents and professionals. SLN Board leadership and Committees Check out the SLN’s Research Briefs on KATIE ARNOLD is the executive ensuring their sibling perspective is the SLN website which highlight research director of the Sibling Leadership included in all our work. related to siblings. Network (SLN) as well as the director of community education for the The SLN focuses on three areas: 3. Policy and Advocacy: The SLN is also Institute on Disability and Human working to get the sibling voice at 1. Support and information: Presentations Development. The passion for her the policy table and is advocating for and trainings on siblings have reached work stems from growing up with her policies that ensure the definition of audiences across the country to increase sister with intellectual disabilities. awareness of the importance of supporting family includes siblings. A Sibling Policy siblings. Peer support and information Brief has been created by the SLN that sharing happens at the SLN’s national highlights key legislation and its relevance conference as well as state chapter to siblings. SLN members have been active conferences and events. Sibshops are at the annual Disability Policy Seminar. hosted by a number of SLN chapters to Additionally, the SLN held Sibling Policy provide a fun space for young siblings Forums and developed an Advocacy We invite everyone who is to gather and get information while Toolkit to help siblings share their stories invested in better outcomes to effect change. playing together. SibNet is the largest for families to join the SLN – it online community for adult siblings of Founded in 2007, the SLN is a national is free and easy to sign up at people with disabilities from around the nonprofit with state chapters dedicated world to connect with each other. The to providing siblings of individuals with www.siblingleadership.org Sibling Survival Guide was developed disabilities the information, support and by SLN members and provides detailed tools to advocate with their brothers and information, resources and strategies to sisters and to promote the issues important navigate the journey as a sibling. The SLN to them and their entire families.

WINTER 2016 | GCDD.ORG 25 MIA’S SPACE

Mia is setting an example for a LIFE WELL- Annie and Christopher’s Space LIVED, in her own home, with lots of friends, By Pat Nobbie, PhD and a GREAT JOB, like any other older sibling might I assigned this column to Mia’s sister and brother for the do, and this is AS IT sibling issue. I asked them two questions: “What was it like SHOULD BE. growing up with Mia?” And, “What are you most concerned about for her future and yours with her?”

iAnnie wrote, “Growing up with Mia was I’d like to add that Mia was the “big sister,” a bunch of silliness. She made everything a position she reveled in. I have many lighthearted and fun. Mia’s personality brought pictures with her arm protectively around out the best personality in me. I could be her younger brother and sister, getting them outspoken and real with her. It was interesting to look at the camera, to listen to me, follow. to see how she perceived life and how it And they expected the same privileges and compared to my perceptions. And she could be sanctions for her, as they would have for any so stubborn. When we were younger, she would other sibling. have tantrums in public places. I could have looked at it with more of a sense of humor, but PAT NOBBIE, PhD, at the time it was embarrassing. I wanted her to “When I got older, having Mia’s mom understand that it embarrassed me, but she was lived with her and knowing always going to do her own thing in the end. her friends helped me I’m concerned about her health and well- broaden my outlook being. If she needs to come and live with me on other kids who had one day, my concern is that we can co-exist disabilities or who were in our living space and that she’ll listen to me socially awkward.” when it comes to the serious stuff.” MIA’S SPACE Christopher added, “We just treated her like a sister, not someone ‘special.’ We always thought she was smarter than people gave Truth be told, I was the softy who caved and her credit for. She really knows people and let her get away with things, which Annie and can manipulate them to get what she wants. Christopher resented. Guilty as charged. God When I got older, having lived with her and help me, I was known to have said, “You will knowing her friends helped me broaden my both grow up, move away from home and outlook on other kids who had disabilities have lives independent of your Dad and me, or who were socially awkward. Knowing her and Mia will still be here with us. In the larger helped me not to judge people and to be more scheme of things, who gets to sit in the front understanding. seat of the car is a small thing.” I worry about losing her. I’m worried about She still always claims the front seat when her health or if something happened to our we travel together. But in contrast to my mom, would she get everything she needs? prediction, Mia is setting an example for a She needs to be around family. Getting her set life well-lived, in her own home, with lots up where she lives now was hard. Annie and I of friends, and a great job, like any other would do it somewhere else if we had to but older sibling might do, and this is as it we know it wasn’t easy.” should be. WE JUST TREATED HER LIKE A SISTER, NOT SOMEONE ‘SPECIAL.’ 26 MAKING A DIFFERENCE REAL COMMUNITIES INITIATIVE

Intellectual Disability and the Death Penalty in Georgia By Caitlin Childs 2015 GFADP vigil for Warren Lee Hill.

Leading up to the 2016 legislative session, a new coalition was formed to advocate for a bill that will change Georgia’s current REAL standard of proof for proving intellectual disability from “beyond a reasonable doubt” to “preponderance of the evidence” in COMMUNITIES death penalty cases involving people with intellectual disabilities. INITIATIVE

The Proof to a Preponderance of the Evidence disabilities in the state legislature in 1988. l(PAPE) Project is a coalition led by the Georgia Unfortunately, the legislation was largely Council on Developmental Disabilities a symbolic gesture, as this was done by (GCDD), Georgians for Alternatives to the imposing the highest legal standard of proof Death Penalty (GFADP) and Georgia Catholics onto individuals with intellectual disabilities Against the Death Penalty. The PAPE Project to prove that they do have an intellectual grew out of GCDD’s partnership with GFADP disability “beyond a reasonable doubt.” as a part of the Real Communities Initiative. Fourteen years later in 2002, the Supreme Preponderance of the evidence, according to the Court ruled in Atkins v. Virginia that Legal Information Institute, means that more the execution of people with intellectual than 50% of the evidence points to something. disabilities was a violation of the Eighth This preponderance is based on the more Amendment’s protection against cruel and CAITLIN CHILDS is the convincing evidence and its probable truth or unusual punishment. The Atkins decision GCDD Real Communities accuracy, and not on the amount of evidence. left it up to individual states to decide organizing director. Of the 31 states that still have the death the standard of proof they would use for penalty, 22 states use the standard of determining an intellectual disability. “preponderance of the evidence,” five states In 2014, the Supreme Court again revisited use “clear and convincing,” three states do the issue of intellectual disability and capital not specify a standard, and one – Georgia punishment in Hall v. Florida. The decision – has the standard of “beyond a reasonable stated that medical standards must support the doubt” for proving an intellectual disability state’s enforcement of Atkins protections. The to the courts. This standard is an extremely court acknowledged that there is professional difficult legal obstacle, and Georgia is the medical consensus as it relates to intellectual only state with such a high standard placed disabilities and it must guide state law. on people with intellectual disabilities. Despite the Supreme Court rulings, Because of the nature of diagnostic processes Georgia continues to be an outlier with and necessary documentation needed to “beyond a reasonable doubt,” and as a adequately prove intellectual disability, a result, continues to execute people with If you are interested in learning standard of preponderance of the evidence documented intellectual disabilities, most more about this issue, or is the only way to ensure that people with recently Warren Lee Hill in January of 2015. would like to get involved in intellectual disabilities will not be executed. GCDD and GFADP will be advocating for advocating for this important In 1986, the State of Georgia executed Jerome this issue in the 2016 General Assembly. piece of legislation, contact Bowden, a man with intellectual disabilities. Mark your calendars for GFADP’s annual Community Builder Dorinda His execution caused such a backlash that advocacy day on February 9, 2016 at Tatum with GFADP for more Georgia was the first state to voluntarily ban 9:00 AM at Central Presbyterian Church information: [email protected] the execution of people with intellectual across from the Georgia State Capitol. or 404.749.6889. WINTER 2016 | GCDD.ORG 27 STRAIGHT TALK Some people may define me by my disability, and while it is a part of

WHO I AM, I live every day knowing that my Goals and disability does not define me. I am defined by Aspirations WHAT I ALLOW By Kenneth Gagne to define me.

STRAIGHT TALK I am 21 years old, and I was diagnosed with cerebral palsy when I was born. A walker gets me around my house, and a wheelchair gets me around the world outside of it. I rode a different bus to school than most students did since they had ino need of a wheelchair lift. It takes me longer than most people to access While I have some issues and concerns certain areas because I have to find a ramp to some people will never have, I have much in bypass a set of stairs, find and press a button common with many people at and around to open doors (provided the button works), my age regardless of a disability. I am equally or wait on an elevator to take me to a higher curious and driven just like they are. But, just floor in a building. If I happen to be outside like my peers without disabilities, I too worry when it rains, using an umbrella is actually about getting a job once I graduate college. an inconvenience. Wherever I go, there are people who may stare at me, make comments or assumptions about me, or call me an “A disability is not a inspiration just for doing the same things limit to potential.” KENNETH GAGNE has been a they are. Georgia resident for 17 years and These people define me by my disability. As we advocate for competitive employment, currently resides in Lilburn. He They have no way of knowing that I took I must make known my desire to live is a 2012 graduate of Parkview and excelled in several Advanced Placement High School and a former student independently and be gainfully employed courses in high school. I studied French and at Southern Polytechnic State in the “real world,” something for which I am currently studying Japanese. I can play the University, which is now Kennesaw could not be prepared just by taking a class or State University. Gagne is an avid ocarina. I am currently pursuing a degree in reading a textbook (every once in a while, I bibliophile and can often be found Computer Game Design and Development. have to look up how to write a check correctly, reading horror fiction, historical I voted in the last presidential election, and I for example). I want to apply my degree in fiction or someone’s autobiography. recently obtained my learner’s permit. He also enjoys writing, which he game design and development to further does most often when practicing None of these has anything to do with my advance science and technology – and perhaps Japanese vocabulary and syntax. having cerebral palsy. Having a disability even help the mainstream community learn Most recently, he has taken up means living with certain limitations, but it that a disability is not a limit to potential. swimming and considers nothing does not affect my goals and aspirations in life. I have to learn skills I do not yet have to else quite as refreshing, liberating It never has, and it never will. Some people apply the skills I do have to reach my goals. or invigorating. may define me by my disability, and while it is In any case, I know that even though I have a a part of who I am, I live every day knowing disability, even though the road upon which I that my disability does not define me. I am embark may have more potholes than I would defined by what I allow to define me. like, getting to my destination, whatever it is, is very much possible.

28 MAKING A DIFFERENCE January February 5 - 7 March 3 - 5 Abilities EXPO, Los Angeles, CA American Foundation for the Blind January 14 - 15 www.abilities.com/losangeles/ Leadership Conference, Washington, DC GCDD Quarterly Meeting bit.ly/1MmUXBG Atlanta, GA February 9 www.gcdd.org Intellectual Disability and the Death March 7 - 9 Penalty GFADP / GCDD Advocacy Day National Council for Behavioral Health January 14 Atlanta, GA Annual Conference, Las Vegas, NV Consortium for Citizens with Disabilities www.gcdd.org bit.ly/1bebKC1 Annual Conference Washington, DC February 11 March 9 - 13 www.c-c-d.org/ Employment First GCDD Advocacy Day Council of Parent Attorneys and Atlanta, GA Advocates Annual Conference January 20 www.gcdd.org Philadelphia, PA NOW/Comp Waiver www.copaa.org/?Conference GCDD Advocacy Day February 11 - 12 Atlanta, GA National Council on Disability March 14 www.gcdd.org Regional Meeting, Orlando, FL Junior Blind of America www.ncd.gov/events Workshop for Parents of Children with January 24 - 27 Multiple Disabilities, Los Angeles, CA Georgia Winter Institute February 18 bit.ly/1O3ilX9 Columbus, GA GCDD Disability Day at the Capitol georgiawinterinstitute.weebly.com/ Atlanta, GA, www.gcdd.org March 21 - 26 International Technology & Persons with January 27 February 24 Disabilities 31st Annual Conference Independent Care Waiver ABLE Act GCDD Advocacy Day San Diego, CA, www.csun.edu/cod/ GCDD Advocacy Day Atlanta, GA conference/2016/sessions/ Atlanta, GA www.gcdd.org www.gcdd.org March April February March 1 April 11 - 13 Disability Policy Seminar Wildcard GCDD Advocacy Day February 2 Washington, DC Atlanta, GA Inclusive Post- Secondary Education www.thearc.org/dps GCDD Advocacy Day www.gcdd.org Atlanta, GA March 2 April 21 - 22 www.gcdd.org Education for All: An Evening with GCDD Quarterly Meeting February 3 - 6 AUCD (Association of University Atlanta, GA Assistive Technology Industry Centers on Disabilities)Washington, DC www.gcdd.org Association Annual Conference bit.ly/1MZk62l Orlando, FL atia.org/i4a/pages/index.cfm?pageid=4549 2016 CALENDAR Planning an upcoming event? Send your information to GCDD Public Information Associate and Social Media Coordinator Jhai James at [email protected]; Subject line: “Community Calendar” by Feb. 15 to be included in the calendar. Visit GCDD’s expanded online community calendar to view additional local events at www.gcdd.org/calendar. HIGHLIGHT: is MARCH THE DISABILITY VOTE Developmental – FEEL THE POWER! Disabilities Disability Day at the Capitol, February 18, 2016 Awareness Month See pages 16-17 for additional details and registration form.

WINTER 2016 | GCDD.ORG 29 US Department of Education Georgia Sibling Connection www.ed.gov tiny.cc/GeorgiaSiblingConnection Georgia State University Sibling Leadership Network www.gsu.edu www.siblingleadership.org

Around GCDD Sibshops: Celebrations of Forsyth Farmer’s Mobile Market the Contributions Made by www.farmtruck912.org Brothers and Sisters The Sibling Survival Guide: Indispensable Advocating for a Information for Brothers and Sisters of Adults Better Georgia with Developmental Disabilities Georgia Council on Developmental Disabilities by Don Meyer and Emily Holl www.gcdd.org http://www.woodbinehouse.com/ main.asp?product_id=978-1-60613- Looking Forward to the 013-1&.asp RESOURCES 2016 Legislative Session Sibling Support Project (Sibshops): Achieving a Better Life Experience (ABLE) Act www.siblingsupport.org www.congress.gov/bill/113th- For additional information congress/house-bill/647 Support Siblings of about the articles and issues People with Disabilities in this edition of Making a Children’s Freedom Initiative Sibling Leadership Network Difference magazine, consult www.georgiacfi.org/ www.siblingleadership.org the following resources. Georgia Inclusive Postsecondary Education Consortium (GAIPSEC) Intellectual Disability and the Georgia Council on gaipsec.weebly.com/ Death Penalty in Georgia Developmental Disabilities (GCDD) collegesuniversities.html www.gcdd.org Georgians for Alternatives to the Death Penalty Georgians for Alternatives to the Death Penalty 404.657.2126 or www.gfadp.org www.gfadp.org 888.275.4233 (ASK.GCDD) [email protected], 404.749.6889 [email protected], 404.749.6889 GFADP Advocacy Day State Government GFADP Advocacy Day www.gcdd.org/advocacy Georgia Senate & House of Representatives www.gcdd.org/advocacy www.legis.state.ga.us UNLOCK (formerly Unlock the Waiting Lists!) Georgia Governor’s Office www.unlockthewaitinglists.com/ www.gov.state.ga.us Stay Connected! 404.656.1776 The Disability VOTE – Department of Community Affairs Feel the Power! www.dca.ga.gov Georgia Council on Developmental Disabilities Like us on www.gcdd.org/2016-disability-day Georgia Housing Search www.georgiahousingsearch.org Facebook @ 877.428.8844 People with Disabilities Take Georgia Legislators to Work facebook.com/georgiaddcouncil Department of Labor www.dol.state.ga.us Employment First Georgia www.employmentfirstgeorgia.org General Information Follow us on www.georgia.gov Georgia Council on Developmental Disabilities Twitter @ www.gcdd.org Georgia Lieutenant Governor’s Office twitter.com/georgiacouncil www.ltgov.georgia.gov National Disability Employment Awareness Month 404.656.5030 www.dol.gov/odep/topics/ndeam/

In The News Becoming a Sibling Advocate National Association of Councils Sibling Support Project (Sibshops): on Developmental Disabilities www.siblingsupport.org www.nacdd.org

30 MAKING A DIFFERENCE Advocating for a Better Georgia

Take Your Legislator to Work Day Visits Thanks to all our participants in this important initiative. Here is the most current list as of press time: • Chad Roberts visited by Rep. Scot Turner • David Stockstill visited by Rep. Darlene • Bobby Chapman visited by Senator P. at Sweetwater Growers in Canton. Taylor at Olson Architects in Thomasville. K. Martin at Kroger in Lawrenceville. • Jordan Huffman visited by Rep. Mike • Christie Entrekin visited by Senator Jeff At press time, the following individuals Dudgeon and Senator Michael Williams Mullis at Christie’s Creations in Trion. are scheduling their visits to take at Roseati’s Pizza in Cumming. • Quron Dixon visited by Senator Donzella their legislators to work: • Bob McGarry visited by Rep. Bill James at Café Aquaria in Atlanta. • Liz Persaud of Georgia Tech in Atlanta. Werkheiser at Living Independence • Janeanne Napoli visited by Senator • Xantha Burghardt of Tow for Everyone, Inc. in Savannah. Frank Ginn at University of ATL in Buckhead. • Brian Mosley, Sarah Parker, and Georgia Law Library in Athens. • Minna Hong of the Shepherd Willie Jones visited by Senator Harold • David Gwynn visited by Rep. Joe Center in Atlanta. Jones and Rep. Wayne Howard at Wilkinson at Atlanta Neurology in Atlanta. • Alicia Hardy Walton Options in Augusta. of Hardee’s in Dalton. • Adrienne O’Prey visited by Rep. Michael • Chester Grant & Eric Foster • Jazzmine Smith and Shyeeta Kelly Caldwell at Resurgens in Kennesaw. visited by Rep. Mickey Stephens at of Thomaston-Upson County • Robbie Huff Rep. Ronnie Memorial Hospital in Savannah. visited by Board of Education. Mabra at disABILITY LINK in Tucker. • Christopher Bivins, • Lindsey Kussow visited by House self- • Brett Wable Rep. Bruce Majority Leader Jon Burns at Edwards visited by employed, of Moultrie. Broadrick Interiors Aerospace in Springfield. at Shaw Industries in Dalton. • Project SEARCH Bartow County • James Jordan Rep. Scott interns • Billy Behrens visited by Rep. Bill visited by at Cartersville Medical Center. Holcomb Hitchens at Gulfstream Aerospace at Krispy Kreme in Doraville. • Viola Wilson of Walton Corporation in Savannah. • Garrett Chason discussed his career with Options in Augusta. Rep. Amy Carter, Rep. Darlene Taylor • BJ Clark visited by Rep. Bob Bryant at • Jessica Luna of Mulberry Senator Dean Burke Chatham County Courthouse in Savannah. and in Thomasville. Elementary in Auburn. • Christopher Varnerin Rep. • Myles Johnson visited by Senator Michael visited by • Katrina Parsons and Carl Teem of Pedro Marin Williams at Chick-Fil-A in Suwanee. at TGI Friday’s in Buford. disABILITY LINK in Tucker. • Corbett Dishman Rep. John • Mia Nobbie visited by Senator Bill visited by Visit our web page which will be updated Yates Cowsert at St. Mary’s Hospital in Athens. at Partners II Pizza in Fayetteville. as new visits are confirmed or scheduled: • Anthony Emerson Rep. • Project SEARCH Hall County interns visited by gcdd.org/public-policy/take-your- Christian Coomer visited by Senator Butch Miller, Senator at Euharlee legislator-to-work-day-a-success.html Elementary in Kingston. John Wilkinson, Rep. Emory Dunahoo (Read full article on pages 18-21.) and Rep. Lee Hawkins at Northeast • Mike Melton visited by Rep. Beth Georgia Medical Center in Gainesville. Beskin at disABILITY LINK in Tucker.

WINTER 2016 | 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

Making a Difference A quarterly magazine of the Georgia Council on Developmental Disabilities VOLUME 16, ISSUE 3 WINTER 2016

Sign Up NOW at gcdd.org/advocacy for GCDD’s 2016 ADVOCACY DAYS!

Meet with Georgia legislators at the State Capitol after advocacy Wed, January 20 – training at any or all of this NOW/COMP Waiver Day year’s GCDD Advocacy Days! Wed, January 27 – Independent Care Waiver Day Tues, February 2 – Inclusive Post-Secondary Education Day Tues, February 9 – Intellectual Disability & the Death Penalty (GFADP) Day Thurs, February 11 – Employment First Day Wed, February 24 – ABLE Act Day Tues, March 1 – Wildcard Day! End-of- Session Advocacy

32 MAKING A DIFFERENCE