. " , ' r:h\0";)0 .lJ<.\ 1\\ \C\'\-t 1 \1 1 1 1 1 1 1 1 1 1 -- A CaU to Action 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 \998 Annua\Report of the Governor's council 1 1 on Developmental Disabiliftes for Georgia 1 1 1 1 1 1 .1 1 Letter from Governor Roy Barnes Dear Friends: In my Inaugural Address, I talked about how Georgia is now a place where neither race, gender, nor geography will divide us: a New Georgia, with a diverse population; a place with opportunity for all, including those with develop-mental disabilities. The Governor's Council on Developmental Disabilities offers invaluable services to those in our state who need greater assistance to live as independently as possible. The Council has provided opportunities for people with .developmental disabilities to achieve productivity, inclusion, independence and integration. In particular, the Council has supported pro;ects that promote school inclusion for our children with disabilities, assisted people in purchasing a home on their own, and improved supported employment. Most notably, the Council began the Unlock the Waiting Lists campaign focusing on better access to home and community based services. I believe that Georgia can be a place where every individual is allowed to live to his or her fullest potential. Working together, we can continue to help those who need us the most. Sincerely, Roy E. Barnes Governor Beat! beat! drums-blow! bugles, blow! Through the. windows-though the doors-burst like a ruthless force, Into the solemn church, and scatter the congregation, Into the school where the scholar is studying; Leave not the bridegroom quiet-no happiness must he have now with his bride, Nor the peaceful farmer any peace, ploughing his field and gathering his grain, So fierce you whirr and pound you drums-so shrill you bugles blow. Beat! beat! drums-blow! bugles! blow! over the traffic of the cities-over the rumble of wheels in the streets; Are beds prepared for sleepers at night in the houses? no sleepers must sleep in those beds, No bargainers' bargains by day-no brokers or speculatorswould they continue? Would the talkers be talking? Would the singer attempt to sing? Would the lawyer rise in the court to state his case before the judge? Then rattle quicker, heavier drums-you bugles wilder blow! Beat! beat! drums!-blow! bugles! blow! Make no parley-stop for no expostulation, Mind not the timid-mind not the weeper or prayer, Mind not the old man beseeching the young man, Let not the child's voice be heard, nor the mothers' entreaties, Make even the trestles to shake the dead. where they lie awaiting the hearses, So strong you thump 0 terrible drums-so loud you bugles blow. -Walt Whitman, from Drum Taps, 1865. In response to federal Developmental Disabilities SeIVices and Facilities Construction Amendments of 1970, (P.L. 91-517), the Governor's Council on Developmental Disabilities was established in 1971. The Council is a twenty-three member Board appointed by the Governor, dedicated to improving the lives of people with disabilities and their family members. The Council creates a unique opportunity to bring together the perspectives of people with disabilities, advocates, universities, and state agencies to help shape public policies regarding people with disabilities. The Council is comprised of six family members of people with disabilities, and six people with disabilities. oThe Council also includes representatives from seven state agencies seJVing people with developmental disabilities, a representative from the state's University Affiliated Program, a representative from the state's Protection and Advocacy System, and a representative from higher education training facilities. The Mission of the Council is to collaborate with consumers, their families, advocacy organizations, and policy makers to enhance the quality of life for people with developmental disabilities and their families through advocacy, education, funding and project implementation, and research and analysis. The Council is located at: 2 Peachtree Street, N. W Suite 3-210 Atlanta, Georgia 30303 You may call us at: 404-657-2126, 888-ASK-GCDD; or 404-6572 I33 TDD. Our fax number is: 404-657-2132. You may access our website at http://www.ga-ddcounciJ.org. We can provide alternative formats for our publications. This publication was made possible through grant number G9901-GABSI I from the Department of Health and Human SeIVices, Administration for Children and Families, Administration on Developmental Disabilities. Letter from the Chair and the Executive Director Dear Friends, It seems that during the last year, the Council's activities in conjunction with those of individuals with disabilities, their families, and advocates can best be described by the picture of an orchestra. An orchestra is multiphonic, with every section a different color and a different voice. As individual sections, we get only a glimpse of the entire song: the loud brashness of the horns section, the shy harmonies of the woodwinds, the delicacy of the strings and the beats of the percussion. But when each of these sections plays together, with a common goal and a common message, the result is a symphony of sounds imagined by the likes of Beethoven, Glenn Miller, John Lennon, Duke Ellington, or Garth Brooks. The Council recognizes that its role in this orchestra we call advocacy is probably most often associated with the percussion section. The Council can use its resources to support the efforts of others in creating change around the state. During the last year, our support helped 35 individuals become graduates of Partners in Policymaking, 18 people purchase their first home, and I9 people get jobs. We provided resources for over 500 advocates to come together and learn through the Advocacy Alliance, Partnership Fund, and other advocacy training activities. But it takes more than the percussion section to make an orchestra. Others had to be the horns, woodwinds and strings. In the past, advocacy in Georgia often resembled individual sections that were on different pages, producing different sounds, without a common vision. This year, we are beginning to see the results of what happens when all the instruments play from the same page of music and work as an orchestra to produce those symphonic sounds. The Council worked with individuals and family members statewide on all of our projects. Organizations such as the Statewide Independent Living Council, Albany ARC, Council on Aging, People First, Georgia ARC Network and others worked with us. Without the participation and leadership of these organizations, we would not have had over 300 people in Macon on a Saturday in September to hear what candidates for statewide office had to say about issues important to people with disabilities and their families. The project that most exemplifies the orchestra is the Unlock the Waiting List Campaign. Together, individuals, family members and advocates came together and created a common song or message-it is time for this state to eliminate the waiting list for home and community-based services. Advocates for people with physical disabilities, developmental disabilities, and the frail elderly began meeting and crafting the composition. We had able conductors in Grace Fricks, Sarita Reddy, and Beth Tumlin who kept us on the same page because we often tried to act as individual sections instead of an orchestra. Each section of the orchestra contributed whether with people power, or funds, or by helping others attend events. The musical composition and the band that plays this song will remain a stalwart in Georgia. The individuals that comprise the ()fchestra may change, but until there are funds to support the 13,000 individuals who are on waiting lists, the band will play on. This is the dawn of a new era, when with all the right instruments, we are playing from a common score with a vision that in Georgia "all persons are included in all facets of community life and have choic- es while exercising control over their lives." Together we can create music, which, as Plato wrote, "...gives a soul to the universe, wings to the mind, flight to the imagination... and life to everything." The Council, its members, and staff feel honored to be a part of this orchestra that is improving the lives of people with disabilities and their families in Georgia. ~ 2. (Jh'~~S~ C. Anthony Cunningham Chairperson Eric EJ a c ' -- Executive Director 2 In Concert...A Call to Action Little did Walt Whitman imagine 134 years ago that his poem, which talks about the undeniable presence of the Civil War in the United States, would apply to the call to action that is being heard by advocates, people with disabilities and their family members all across Georgia. Just as Whitman's instruments indicate the inevitability of action, the bugles' blast and drums' insistence signal the advent of the disability civil rights movement. It is a clarion call that people are rising to pay attention to: the call that will mean a greater potential than ever before to achieve inclusion, independence, integration and productivity for all of Georgia's citizens. Constituents sense the tuba's deep chords getting to the heart of independence and family issues. They heed underlying drum beats-the rhythm of understanding that nothing progresses without education. They hearken to the flute, weaving harmony and consistency through community inclusion. And they hear the awakening sounds of the bugle, which bring information to people who need it most. The instruments tell the people of Georgia it is time to act; for this is the time for people with disabilities and their families to unite to make a difference. It is this movement that we will chronicle in our report. Sensing the Tuba's Deep ChordsIndependent and Family Lifestyles There is something about the currents stirred when a tuba is played. The notes are so low and omnipresent in the air, that one senses that they reach right into one's soul and reverberate. The notes have the power to transform one's life. It is also so of the projects the Council supports around independent and family lifestyles. Home of Your Own Project-The Georgia Home of Your Own Alliance (HOYO) is modeled after a national program. Since people with developmental disabilities typically are on fixed incomes and have no credit history and little savings, the project enables them to purchase their own homes through a network of local support and the availability of loan programs and down payment assistance. In Georgia, local support networks consist of eight Expertise Teams which assist individuals through the process of housing counseling, loan application, and other servi@es. In 1998, three new Expertise Teams were formed. This year's HOYO activities included participation in the Fannie Mae Home Choice underwriting initiative training; advocating for the development of home ownership programs and home modification programs for poor and very poor people with disabilities; increasing the number of expertise teams to offer mentoring to additional communities to increase the number of participating communities; providing expertise teams with extensive training on the development of detailed housing plans including financial aspects for at least six consumers; and monitoring and reporting on the pervasiveness of current home ownership programs and impact of the Georgia HOYO project. While Fannie Mae's Home Choice does not seem to be a desirable option for Georgia lenders at this time, the training was extremely beneficial because it provided a model for the Department of Community Affairs to develop their Own Home program. The Own Home loan program is the only one of its kind in the state. Results of the third year of the project show that eighteen people with disabilities own new homes; and 17 of those are borrowers below 30% of median income. The Department of Community Affairs made these loans through the Own Home program for a total amount of $364,628. In FY 98, 16 more loans were in process, most of which were expected to result in home ownership. The Own Home Loan Program is not pervasive at this time. Six banks or lenders have participated so far and the Department of Community Affairs is working to expand that number. At the end of this year, the marketing division added another staff person which will double its capacity to market the pro~ gram. ($30,000) Expanding Capacity of Business to Employ People with Disabilities-The goal of the employment capacity expansion project was to substantially increase the base of employers across the state that were proponents of and active partic~ ipants in supported employment, thus creating greater job opportunities for people with develop~ mental disabilities. An increase of 18 businesses in that base of employers was accomplished through activities including: the creation of a think tank to generate ideas about increasing employment opportunities for people with developmental dis~ abilities; human resource training which allowed business persons to hear from their peers, rather than from "government workers," how well employ~ ing people with disabilities can work; and the creation of a resource guide for employers writ~ ten with businesses as the target audience with the capacity to be customized for a local area. The guide is to be used for future train~ ing and distributed through the Department of Labor and the serv~ ice system. As a result of these --~ / " ' : ; I activities, 19 adults have jobs of their choice, and 178 people in generic occupations received train~ ing in employment. ($45,000) Leadership Institute on Person~Centered Planning-The Leadership Institute was an inten~ sive training for service coordinators and direct care workebs on how to incorporate person~cen~ tered planning into the routine care of people with developmental disabilities. Teams representing 18 organizations were taught by a nationally~recog~ nized trainer for three day~long workshops over a period of nine months. Each team selected a focus person with whom to test what they learned. They followed the accomplishments of the focus person as well as their own over the course of the training. Following that, each team submitted a plan for a Renewal Project, the goal of which was to expand the knowledge and skills gained to either more focus persons or to target more staff for training within the organization they represented. The results of the Renewal Projects will not be known until next year, but as a result of this year's activi~ ties, five focus participants reported an increased frequency of community participation and higher values placed on their roles in their community. Two reported improved living situations. Also, sig~ nificant statistical increases occurred for paired samples of focus participants in how many know their neighbors, how many have friends without disabilities come and visit, and how many have choices in the matter of clothing and in what they eat. Overall, there was statistically significant increase in the amount of choice that focus partici~ pants have in their lives. ($72,000) Passage of HB 1131IReauthorization of HB 1OO~Mental HealthlMental Retardation! Substance Abuse Service Delivery ReformIn 1993, the Georgia General Assembly passed HB 100, which reformed the public mental health, mental retardation, and substance abuse service system. The legislation contained a sunset provi~ sion limiting its life to June 30, 1999. This year, advocates sought the Bill's reauthorization. Stakeholder meetings facilitated a consensus so reauthorization could be pursued. To guarantee the continuation of services for people with develop~ mental disabilities in the delivery system, the Council supported the reauthorization legislation. HB I 131 was introduced; it subsequently passed and was signed into law. The Bill removed the sunset clause and allowed for consumers and their families to have more responsive, accessible services; public managers to have the flexibility to move funds where services are most needed; private providers to be included in the public service network; and citizens to have better services for their tax dollars. Welfare Reform Project-The Welfare Reform Project was aimed at ensuring that service agency staff have knowledge about disability~relat~ ed issues and resources, and that people with developmental disabilities and family members have accurate information about Welfare Reform and an opportunity regarding its impact on them. This year, four of six forums were held across the state, during which project administrators assessed the need for resources and information that still exists. An average of 60 people attended each of the four forums, with the greater percentage of par~ 4 ticipants being agency representatives. When all pliance was not sellable. Another problem was the the forums are completed, a report on policy rec- scope of the Bill. There was a strong move to have ommendations for incorporating the needs of peo- eligibility for coverage be based on only 5-7 diag- ple with developmental disabilities into TANF regu- noses. This would have been catastrophic for many lations will be published. This document will children with disabilities, none of whose diagnoses enable the system to recognize that people with would have been covered. After approximately 60 disabilities are the most difficult to place in jobs hours of negotiation with the insurance industry and that parents may, as long as current regula- representatives, and with a strong coalition effort, tions are in place, be better off continuing on the the bill remained broad-based, and a final version TANF rolls in order to take care of their children. was even expanded to include substance abuse. A ($85,335 +$13,090 match) new Bill, Senate Bill 620, was passed as a mini- PeachCare for Kids-At the beginning of the 1998 legislative session, Governor Zell Miller announced his support for legislation that would' insure a large segment of uninsured Georgia children. This initiative was the result of the Federal Balanced Budget Act of 1997, which created a Children's Health Insurance Program. Governor Miller's legisla- mum offer, not a mandate where insurance companies could offer, but were not mandated to offer this coverage. For the first time anywhere in America, a basic level of services were defined for small groups (2-50 employees). A more comprehensive level of services was defined for large groups (50+). The Bill passed the House with only 1 dissenting vote, tion, SB 110, would create a private insurance program for all children under 200% of the federal poverty level and be administered by the Georgia Merit System. ~~~~~l~~~~o~~~=~i~~~~~t~~O~~~~::~t~;o~s::n~ec~~:~~t1~e::~~~~f~'.-~.~/...'..-- ~ :.;~ ---- At first, children's advocacy and ----.: and was signed by Governor Miller in April. Activities of this campaign included extensive grassroots education through printed materials; buttons; a toll-free call-in legislative update hotline; community presentations in Augusta, Columbus, Athens, Gainesville, Thomasville, and Atlanta; extensive networking with Coalition partners; negotia- along with several statewide advocacy organizations, family members, and self-advocates, educated members of the General Assembly and the public, and worked to guarantee that children with developmental disabilities would receive appropriate coverage. Children's advocates and the disability community tions with insurance industry representatives; the Mental Health Day at the Capitol rally; media activity; specific outreach to families of people with developmental disabilities; and weekly coalition meetings. In all, 750 people were trained in systems advocacy about this issue. ($9,000) initially proposed that the program should be a Unlock the Waiting Lists!-In March of Medicaid expansion. The result was that children 1998, advocates began to mount a statewide cam- under age 6 are included in the Medicaid program paign. The goal of the campaign is to ensure that and children over age six are in PeachCare for Kids, the 13,000 Georgians with disabilities and those a Medicaid look-alike program administered by the who are frail and older, who are eligible under Department of Medical Assistance. This initiative Medicaid, would receive home and community- allowed an additional 228,000 children in the state based services. These advocates enlisted the sup- to receive health care. port of the Council and other agencies and com- Mental Health Parity-During the 1998 leg- islative session, a mental health coalition aggressively pursued passage of parity legislation. During the previous session, Senate Bill 245 had passed the Senate with ease, and it was held over the summer for consideration by the House in 1998. When it stalled in the House Insurance Committee, it became clear that the provision mandating com- munity groups to form a strong partnership to look towards obtaining funding in the 1999 legislative session and beyond. The Council supported the Campaign both fiscally and with personnel devoted to creating public awareness of the waiting lists issues. Towards the end of 1998, the Council became intricately involved with the public relations piece for the Unlock the Waiting Lists Campaign. Executive Director Eric Jacobson was scheduled to speak, along with Representative Georganna Sinkfield of District 57, and advocate Leonard Roscoe on 11 Alive News in Depth in Atlanta the day before the General Assembly started. The Council had responded to an article on the campaign in Creative Loafing, and an editorial in the Atlanta Journal~Constitution. Statewide media efforts will continue on this campaign into 1999 and beyond. (850,000) Financial and Legal Considerations for Children and Adults with Developmental Disabilities-This activity was a workshop for attorneys, health and social service providers and individuals with disabilities and their families about community trusts for persons with disabili~ ties. Twenty~three attorneys and approximately 38 other individuals attended, repre~ senting a variety of geographic loca~ tions. During the course of the training, it became clear that fami~ --- lies need a great deal of informa~ tion concerning their options in financial planning for loved ones with a disability. The event provided opportunities for networking, and improved communication and understanding between legal repre~ sentatives and consumers and fami~ lies. Secondary data concerning dis~ ability issues which reinforce cur~ rently held views concerning chal~ lenges and strategies around service provision were also gathered. (87,685) Heeding the DrumbeatsEducation Rhythm is as integral to our lives as the beating of our own hearts, and the breath we take in to live. So, too, is the rhythm of education: present, essen~ tial to survival, ever~important to thriving in a com~ plex society. The investments made in inclusive education across the state have established the Council as a leader. Better All Together-For seven years, the Governor's Council on Developmental Disabilities has invested in educational inclusion activities for students with developmental disabilities. The investment has taken several forms including: (1) establishing a Steering Committee on Inclusive Education~a vehicle for collaborative discussions and learning for parents, school teachers, adminis~ trators, and other interested participants; (2) com~ pleting four highly successful conferences (Better All Together HV) that have attracted over 500 peo~ pie each year and resulted in positive changes in a number of school systems; (3) funding (over two different funding cycles) mini~grants to 23 school systems across the state to improve their efforts to be inclusive; (4) sponsoring a series of training ses~ sions on school~wide accommodations to assist schools and parents find better ways of including children in classrooms in FFY 1999; and (5) estab~ lishing Project WINS!, an effort to provide technical assistance at various levels to schools that are working toward including children in all aspects of school activities. The purpose of the Conference was to provide information to teachers, parents, and administra~ tors about best practices for includ~ ing children with disabilities in the classroom. Participants were expected to use this information in their own schools. Over 500 teach~ ers, administrators, and parents attended the third Better All Together Conference held during FFY 1998. One hundred parents were trained about their children's educational rights as a result of the Conference. (871,256+820,805 match) Project WINS!-In July, 1998, the Council began a three~year initiative to promote inclusion in schools across the state. Project WINS! will result in a comprehensive approach to support local schools which demonstrate a willingness and desire to work toward becoming inclusive settings for all children to learn. The project will offer a vari~ ety of assistance based on a growing understand~ ing of what works to help schools improve their capacity to include children with disabilities. The project will coordinate a network of schools that are working toward successfully including children with disabilities. Thirteen schools were accepted to become part of a network that will receive technical assistance, representing various geographic loca~ tions and different levels of inclusion from first 6 stages of implementation to having several years of successful inclusion efforts. The project will also provide technical assis~ tance through a network of consultants who can provide direct local support to schools and to teachers and others in classrooms. Support might include direct assistance to teachers and adminis~ trators; peer counseling and support for teachers, administrators and other school workers; and work~ shops and conferences for teachers, administrators, school personnel. and parents. In addition, the project will allow schools both in and out of the network to share information about best practices for including children with disabilities in schools, including general inclusive practices and other techniques to disseminate information such as conferences, workshops, and newsletters. ($200,000) Youth Achiever, Essay and Art Contests-In 1998, the Council sponsored the 12th Annual Youth Achiever, Essay, and Art Contests, which are statewide con~ tests held in schools for grades I~ 12. The intent of the contests is to build awareness and foster under~ standing and sensitivity of disabili~ ty issues among students and chal~ lenge their beliefs by having them respond to the theme, "More the Same than Different." The other goal of the contest was to identify an exceptional student with a disability who had both excelled academically and in extracurricular activities. ($40,000) Hearl