MAD Mag Winter 2004gcdd.org/images/GCDD_MADWinter2005.pdf · 2017-07-23 · one expert shares his ideas for bridging the budget gap. GCDD outlines budget and legislative items to

WINTER 2005

www.gcdd.org

GEORGIA GOVERNOR’S COUNCIL ON DEVELOPMENTAL DISABILITIES

Real Homes. Real Jobs. Real Education. Real Choice.

2 Making a Difference • Winter 2005

TABLE OF CONTENTS

Features8Fixed Budget Gap MayMean Even Longer Waits

With therate of needoutpacingthe growthin revenue,one expertshares hisideas forbridging thebudget gap.GCDDoutlinesbudget andlegislativeitems tosupport oroppose.

12Grass Roots AdvocacyBuilds RelationshipsParticipating in the process ofeducating legislators in the nameof advocacy helps find candidatesto champion disability issues.

18Advocacy 101: On theThreshold of ChangeExperts across Georgia explain howto advocate for the disabilitycommunity.

5GCDD Welcomes New EditorPR veteran Valerie Meadows Suberjoins the GCDD staff.

23Disability Rights CommunityLoses Trail BlazerAdvocate Elaine Wilson’s fight led tolandmark civil rights decision.

24Destination EqualityDiscovery Tour highlights bestpractices for employees,organizations and more.

12

4GCDD ViewpointAdvocacy Key to Unlocking the Waiting Lists With new leadership in theHouse of Representatives,there is an opportunity tocreate new relationshipsduring the 2005 legislativesession.

6News & EventsNew Disability DirectorNamed; Housing Championhonored; Person-centeredplanning session held; FirstABILITY House built in GA;Educators honored fortransition work

16Point/CounterpointLegislative Partnerships orCivil Disobedience?

27Straight TalkThrough her Partners inPolicymaking class, SusieEdwards learned how toadvocate for herself.

29Medical UpdateEarly testing helpsdetermine the best courseof action for maximizing a child’s potential.

DepartmentsIn Each Issue3 Letter from

Governor Sonny Perdue

5 Editorial Cartoon

28 Resources

30 Calendar

8

About Our Cover: 5,517 Georgiansare lined up for services andsupports, yet the budget gap maymean delays for unlocking thewaiting lists.

18

Winter 2005 • Making a Difference 3

FROM THE GOVERNOR

Volume 5, Issue 3 Winter 2005

A quarterly magazine of theGovernor’s Council on

Developmental Disabilities.

The Governor’s Council onDevelopmental Disabilities collaborates

with Georgia’s citizens, public andprivate advocacy organizations andpolicymakers to positively influence

public policies that enhance thequality of life for people withdisabilities and their families.

GCDD provides this through education and advocacy activities,

program implementation, funding andpublic policy analysis and research.

Lynnette BraggChairperson

[email protected]

Eric E. JacobsonExecutive Director

[email protected]

2 Peachtree Street NW, Suite 8-210Atlanta, GA 30303-3142

Voice 404-657-2126Fax 404-657-2132

Toll free 1-888-275-4233TDD 404-657-2133

www.gcdd.org

Valerie Meadows SuberEditor-in-Chief &

Public Information [email protected]

Valerie Smith BuxtonManaging Editor

O’Neill Communications, [email protected]

O’Neill Communications, Inc.Design & Layout

Jeremy ChotinerCover Feature

Sara TrimbleCartoonist

To Georgia’s Disability Community,

T his issue of Making A Difference comes on the eve of our legislative session. As parental, care-giver, and self-advocates for Georgians with disabilities, you will be heavilyinvolved in the process. With your help more people with

disabilities will live fuller lives by integrating into ourlocal communities.

As Governor, I will continue to work hard to create apeople-focused state government and a state budget thatmeets the needs of all Georgians. I remain committed tomaking investments in programs that achieve positiveresults.

The results I envision for people with disabilities arethe same as I have for every Georgian. They should live asindependently as possible, surrounded by people who loveand care for them, in a safe community. This result canbe accomplished through hard work, good ideas andcreative actions. Over time, by making the best use of thestate’s limited resources, positive results will be achieved.

A partnership with the Governor’s Council on DevelopmentalDisabilities is essential to achieving this vision. So I welcome yourbest thinking and encourage your involvement with the Council.

On February 24th the Governor’s Council on DevelopmentalDisabilities will be hosting Disability Day at the Capitol. I invite you to participate in this event as we work together to improve thelives of people with disabilities in the State of Georgia.

Sonny PerdueGovernor


I magine waking up oneMarch morning and readingthe headlines of thenewspaper:

It could happen. Maybe not this year, but it is not so hard to believe that Georgia could again become a leader insupporting people with developmental disabilities and their families. The real question is how to make it become a reality. I believe that it starts with advocacy – each individual and family member can be the agent necessary to move Georgia from

45th in the country to number one. By joining together we can become the force that demands the changesneeded to make sure that the people who require services are receiving quality supports.

Many of you receiving this magazine are graduates of programs such as Partners in Policymaking. You havespent countless hours learning how to advocate for yourself and others; now is the time to use those tools toeducate policymakers that it is time for a change.

By the time you receive this edition of Making a Difference, the 2005 legislative session will have begun.There is new leadership in the House of Representatives, which means we have an opportunity to create newrelationships. You need to take the time and talk with the individuals you helped elect and tell them your story.Tell them the success story of an individual who once lived in a state hospital but now lives in the community and has a job. Introduce yourself or a family member who wasonce on the waiting list but now receives supports.

Last year, families receiving supports through the Deeming(Katie Beckett) Waiver launched a heroic and successful advocacyeffort. Several legislators have used this effort as an example of

how interaction between citizens and their elected representatives shouldwork. Many families supported the leadership provided by Heidi Moore andTonya McConnell across the state. Their focused message through the mediaand work with several key legislators resulted in the defeat of a proposal toplace a premium on the waiver.

This year, the Department of Human Resources has recommendedfunding for 1,124 people who are currently on the waiting lists for home andcommunity-based services. The department has also recommended a 6 percent provider rate increase. These requests weremade because the department heard the same message from people across the state: “We must unlock the waiting lists!”This targeted message and advocacy resulted in the waiting lists becoming one of the department’s top priorities.

Now is the time to thank those legislators who have supported us in the past and educate new legislators about ourissues. Take a copy of this magazine to your legislators and ask them to support the effort to reduce the waiting lists,increase provider rate reimbursements, and make polling places more accessible. Finally, invite them to the 7th annualDisability Day at the Capitol on February 24th.

You are the power that can make the headlines in your local newspaper a reality. I look forward to seeing each of you on February 24. I invite your comments; please reach me at [email protected] or 1-888-275-4233.

Advocacy Key to Unlocking the Waiting Lists

Eric E. JacobsonExecutive Director, GCDD

GCDD VIEWPOINT

“No more waiting lists for home and community-based services.”

By joining together we can

become the force that

demands the changes needed

to make sure that the people

who require services are

receiving quality supports.

GCDD WELCOMES NEW EDITOR

Letters to the EditorLetters should include the writer’s full

name, address, phone number, and may beedited for purpose of clarity and space.

Email us at:[email protected]

Call us at:Valerie M. Suber, 404-657-2122

Fax us at: 404-657-2132

Or you can visit us at: 2 Peachtree Street, NW, Suite 8-210

Atlanta, GA 30303-3142

Sponsorship:For sponsorship opportunities contact:

Christina Carlton at 770-578-9765 [email protected]

Subscriptions / Back IssuesVisit us at our web site: www.gcdd.org

or call us: 404-657-2126

It is the policy of Making a Difference topublish readers’ comments. Contents do not

necessarily reflect the opinions of GCDD, the editors or state government.

HOW TO REACH US


F or as long as she can remem-ber, Valerie Meadows Suber, new public information directorof the Governor’s Council onDevelopmental Disabilities and

Making A Difference magazine editor-in-chief, wanted to communicate ideas tofoster positive social change and improveconditions in people’s lives.

Media coverage of events during thecivil rights movement sparked Suber’s earlyinterest in public affairs. Its message ofaccess and inclusion for all Americanscaptured her attention. As her appetite for news and information grew, she set hersights toward journalism that she studiedat Boston University’s School of PublicCommunications.

“I personally share the vision of GCDD that supports and encouragesinclusion, choice, achievement, potential,opportunity and advocacy for all persons,and I believe Making A Difference magazineis an important instrument for furtheringpublic dialogue among all stakeholderswithin the developmental disabilitiescommunity,” Suber said.

Suber produced public affairstelevision programming in Philadelphia,where she crafted relevant shows on theday’s topics, including an Emmy-nominateddocumentary.

She served as a coordinator ofcommunity and media relations for AtlantaCity Council, implementing communityoutreach and constituent services throughdistrict newsletters, community empower-ment conferences and special projects.

As executive director of Kids VotingAtlanta, a nonprofit civics educationorganization, Suber managed a program forthousands of K-12 students that introducedthe fundamentals of citizen participation inthe democratic process, complete with avoting experience during election cycles at official polling precincts.

Suber provided spokespersons for community forums, media, newsconferences and symposiums on a varietyof social and economic development issues

targeted by The Atlanta Project, acommunity outreach initiative of The Carter Center.

The sudden loss of nearly 80% of her eyesight did not deter Suber frompursuing work she loved. In fact, shebecame convinced that she had a lot moreyet to offer. “I realized I would have toembrace the concept of interdependency. I knew I would have to commit to learningnew ways of functioning in order to remainproductive.”

Suber enrolled in classes at the Centerfor the Visually Impaired in Atlanta toacquire skills in the use of adaptiveequipment and computer software. Shebecame proficient in using magnificationand speech screen reading devices. Shewas determined to continue to participatefully and effectively as a visually impairedperson in a sighted world. Thanks tomodern assistive technology, a system offamily and community support and a lot ofdue diligence, she is doing exactly that.

Suber will assist GCDD ExecutiveDirector Eric Jacobson on a variety ofspecial assignments and tasks.

“We arevery excited tohave Valerie joinour team. Shewill help useducate themedia and publicabout the needsof people withdevelopmentaldisabilities andtheir families.She brings a newlevel of profes-sionalism to ourpublic relationsefforts based on her knowledge andexperience,” Jacobson said.

Suber will manage GCDD’s internal andexternal communications and publications.Greater emphasis on public awareness ofdevelopmental disabilities policy and pro-grams will be among her top priorities. ●

Suber Joins GCDD as PublicInformation Director, Editor-In-Chief

Valerie Meadows Suber

Johnny becomes eligible for statefunded sevices and supports . . .


NEWS & EVENTS

Stephen R. Hall, Ph.D., becamedirector of the Office of DevelopmentalDisabilities of the Georgia Department ofHuman Resources (DHR), January 1. Hallreceived his Ph.D. in disability policy fromVirginia Commonwealth University andbrings 14 years of executive leadershipserving people with developmentaldisabilities. Hall leaves his position asexecutive director of the ResourceExchange, a community-centered board in

Coloradoresponsible for disabilityservice systemsfor childrenand adultswhere hemanaged a $24million budget.Hall will workdirectly withDivision ofMental Health,DevelopmentalDisabilities and AddictiveDiseases(MHDDAD)Director GwenSkinner. “We

believe that we have the best candidatefor helping to move Georgia’s disabilitycommunity to the next level,” Skinnersaid.

As DHR continues to expand andenhance community partnerships,advocates served an important role in theselection of the best person to supportissues specific to Georgia’s disabilitycommunity. Eric Jacobson, executivedirector for the Governor’s Council onDevelopmental Disabilities, participated inthe selection process and stated, “We areexcited about Dr. Hall’s appointment andlook forward to working with him tocreate a new vision for Georgians withdisabilities.”

With input from key stakeholders, Hall will be responsible for developing and implementing state policy fordevelopmental disability services, inaddition to setting standards for servicesand expected outcomes of those services.

Housing ChampionHonored for Service

Eleanor Smith, founder of ConcreteChange and co-founder of Georgia’sEasyLiving Homecm program, wasrecognized for her outstandingachievements in affordable housing bythe Georgia Department of CommunityAffairs (DCA) during its Fourth AnnualHousing Georgia Conference and MagnoliaAwards Program November 10.

Smith received the Housing ChampionAward in honor of her pioneering work inthe “visitability” movement.

Visitability is the movement thatfocuses on designing housing in such away that it can be lived in or visited bypeople with disabilities. According toSmith, “a house is considered visitablewhen it meets three basic requirements:”

• At least one zero-step entrance.• Doors and hallways wide enough for a

wheelchair to navigate through(minimum 32” clearance).

• A half bathroom on the main levellarge enough to be accessed bysomeone in a wheelchair.

Smith says her goal is to havevisitability in every new home. DCACommissioner Mike Beatty lauded Smithfor “her efforts to make life easier formillions of people with disabilities andricher for millions of able-bodied peoplewho will someday find their homes easierto live in and find it easier to welcomeeveryone into their homes.”

Smith’s determination has also helpedto make the EasyLiving Home program amodel certification program for otherstates. The program allows participatingbuilders to certify that their homes arevisitable and meet certain standards.

Among her other numerousachievements, Smith has received a BestPractices Award for Visitability from theDepartment of Housing and UrbanDevelopment in 1999 and the VitalService Award from the Atlanta Allianceon Developmental Disabilities in 2002.

While accepting the HousingChampion award, Smith reminded theaudience that though there has beenmuch advancement in making publicspaces accessible, “the current reality oftypical home construction leads to somefairly severe consequences.” Sheexplained, “People who develop mobilityimpairments are suddenly cut off from thehomes that make up the core of theirsocial life, from their adult children andsiblings, from their neighbors and fromlong-time friends.” Unfortunately, forsome Smith says, “their own homeschange from being a refuge to becominga source of frustration and danger.”

For more info about Concrete Changevisit www.concretechange.org, for EasyLivingHome program, visit www.easylivinghome.org.

Transitioning StudentsParticipate in Person-Centered Planning

The Georgia Department of HumanResources recently hosted a person-centered planning session, “Transitioninto Adulthood,” for people with disabi-lities in Duluth, as part of a three-yearproject funded by a grant from the Centerfor Medicare and Medicaid Resources.

During the two-day session, indivi-duals with disabilities and their circles of support were taught to “think outsidethe box” and begin to develop plans toachieve key life goals.

Internationally renowned person-centered planning experts Connie LyleO’Brien and Beth Mount are consultingwith the Department of Human ResourcesDivision of Mental Health, DevelopmentalDisabilities and Addictive Diseases (DHR/

DHR Names New DD Director

Eleanor Smith (center) was presented this year’sHousing Champion Award for her work to bringvisitability to all new homes by Carmen Chubb,DCA director of housing, finance division (l)and Mike Beatty, commissioner of DCA (r).

Georgia’s new director of the Officeof Developmental Disabilities,Stephen R. Hall, Ph.D.


MHDDAD) on implementation of stafftraining as well as conducting group-facilitated person-centered planning.

“We hope the participants andproviders will take what they learn backinto their communities and show othershow to implement person-centeredplanning,” explained Stephanie Frankos,project coordinator, who is responsiblefor implementing the goals and reportingoutcomes to MHDDAD.

What is learned during the sessionwill also be used to help implementsystem change, and Georgia hopes thatthe expansion of services that are person-centered can support principles of self-direction.

“By bringing groups of peopletogether (families, schools, neighbors,friends, churches, etc.) it is our hopethat natural resources can be utilized insupport of independent and meaningfullives,” Frankos said.

Volunteers with Disa-bilities Build Atlanta’sFirst ABILITY House

Volunteers with all ranges ofdisabilities, including paraplegia,amputations, low vision, Down syndromeand more united at an Atlanta Habitat forHumanity home site in East Point tobuild an ABILITY House for KawaTalabani, his wife Amina Shaheen, whohas heart disease, and the couple’s fourchildren, ages 13, 11, 4 and 10 months.

An ABILITY House is an affordable,accessible home built for a low-incomefamily in which one or more membershave disabilities. The ABILITY Houseprogram also uses volunteers with disabi-lities during construction and was recent-ly honored by President Bush with aPresidential Community Volunteer Award.

“I always wanted to be a part ofHabitat, but I thought my wheelchairmight get in the way,” said StephanyGlassing, of Marietta, who worked severaldays on the project. Glassing helped cutsiding and caulk chair rail on her visits tothe home site. “I never felt like an

outcast, and they gave me a lot of handson work, which I thrive on. I really hada good time with it. I wish they’d buildmore houses like it in Atlanta,” she said.

“We have had tremendous response tothe ABILITY House project and arepleased to be bringing it to Atlanta,”noted Chet Cooper, executive director ofABILITY Awareness, the organization thatoversees the program. “It is also great tobe working with the Atlanta Habitataffiliate, which is already dedicated toincorporating accessibility and visitabilityfeatures into each home they build.”

Volunteers with disabilities workedalongside volunteers from BellSouth andBellSouth Telecom Pioneers to completethe home in only seven days ofconstruction, over seven weekends. TheHome Dedication Celebration wasSaturday, Dec. 11, followed by an openhouse showcasing the home’s manyuniversal design and visitability features.

Talabani and Shaheen are the firstrecipients of an ABILITY House inAtlanta. Shaheen, 35, had a life-threatening split in the wall of one of hermajor arteries in November 2003 and hassince had coronary bypass surgery andhas an implanted defibrillator, thatshocks her heart if it stops beating fortoo long. The device causes weakness anddiscomfort in Shaheen’s left arm. She isfrequently exhausted, and she hasdifficulty reaching, opening doors andperforming routine household tasks.

Educators Honored for Transition Work

Pioneers in transitioning students withdisabilities from school to work werehonored October 29 during the Power UpFor the Future (PUFF) Conference.

The Transition Honor Roll recipientsprepared students to navigate the systemof adult supports and services, while alsopreparing them for jobs.

The recipients, who were selected byrepresentatives from the Departmentof Labor, Department of Education,Department of Technical and Adult

Education and the Statewide TransitionSteering Committee, include:

Debbie Mentzer, Beverly Blue, JaneBruno, Paige Case, Carol Herb, MargoGreene, Denise Klesick, Mary Ford andDouglasAnn Smith of Savannah/ChathamCounty Schools began including avocational endorsement seal on SpecialEducation Diplomas to signify studentscompleted a rigorous vocationalcurriculum. They also worked with atechnical school to increase opportunitiesfor students with disabilities.

Dr. Mike Blake and the Clarke CountySchools Interagency Transition PlanningCouncil in Athens are developing aregional Interagency Transition PlanningCouncil to serve the rural areas ofnortheast Georgia. These councils bringvarious agencies together so students canaccess them more easily.

Teresa King, Lori Oliver, LisaRothschild and Cindy Saylor of FloweryBranch High School in Hall Countyreceived a grant from the Governor’sCouncil on Developmental Disabilities tohelp students develop self-determinationskills, using a person-centered approachwhen developing transition plans. The staff also formed a “Partners Club”that pairs students with and withoutdisabilities for school, community, civicand social activities.

Denise Oravec of Rockdale CountySchools developed a proposal to attach a seal of endorsement for participation ina rigorous vocational preparation programon the Special Education Diploma. ●

NEWS & EVENTS

Volunteers with disabilities worked alongsidevolunteers from BellSouth and BellSouth TelecomPioneers to complete the ABILITY House in onlyseven days of construction.

Karen and Art De Chant

have been waiting 13 years

for a full Medicaid waiver

for their son Brian, 31, who has

Cockayne syndrome. Brian requires

constant supervision and has a

number of health issues related to

his disability, including hearing loss,

poor vision, extreme sensitivity to

the sun and a frail body.

“We need a support system. Taking care of Brian is like having a threeor five-year-old for a very long time. We can’t leave him alone, and you can’tget a babysitter for a 31-year-old man,” Karen De Chant said.

After Brian left school, De Chant hadto cut back her work hours to part time to take care of him. While waiting for thewaiver, the De Chants have been relyingon respite care, the People MakingProgress program and the YMCA’s HAPPYProgram that pairs young adults with andwithout disabilities for social activities.

While these programs provide somesupport, caring for Brian has been

difficult. “We don’t have a normal social life, andit’s impacted our income because I can’t work fulltime,” De Chant said. “One of our fears is that we will die before he does.” In addition, the DeChants pay extraordinary costs for dentistry andhearing aids that aren’t covered with insurance.

“When we call about the waiver, they alwayssay we’re on the short-term list, but last year there were only 10 waiver slots,” she said.

Brian joins 5,516 other Georgians who are

waiting for the state-funded supports and servicesthey need to remain with their communities andfamilies. Without these supports and services inplace, many of these people may have to move intoinstitutions, which cost taxpayers much more thancommunity-based services.

“These are some of the most critical servicesfor people that without these supports would beour state’s most vulnerable. These needs will not goaway, and we have to begin facing them today,”said Dave Blanchard, of Atlanta Alliance onDevelopmental Disabilities.

People go on waiting lists when their areaRegional Boards cannot serve them and/or meet all their needs due to lack of funding.

Some progress has been made. The newDirector of the Division of Mental Health,Developmental Disabilities and Addictive DiseasesGwen Skinner included funding for more than 1,100people to come off the waiting lists within theproposed Department of Human Resources (DHR)budget. But that still leaves more than 4,400Georgians waiting for help. And, the slots will onlybe funded if Governor Sonny Perdue approves a DHR budget that is 105% of the current budget.

Theproblem isworsened bythe fact thatGeorgia isfacing abudget gap of$1.5 billioncaused by anincrease in need for state-funded services and adecrease in the revenue stream. Alan Essig,executive director of the Georgia Budget and PolicyInstitute, a nonprofit, nonpartisan organization,explained, “In the ‘90s, when the economy wasgood, our revenues were good. Personal incomeand capital gains revenue was up. At the sametime sales tax revenue went down due toexemptions for certain items, but revenues didn’tdecline because the economy was strong.”


Brian De Chant hasbeen waiting for stateservices for 13 years.

“When we call about thewaiver, they always saywe’re on the short-termlist, but last year therewere only 10 waiver slots.”

Fixed Budget GapMay Mean

By Valerie Smith Buxton

gEven Longer Waits

5517

However, in the 2000s,Essig noted,“When therecessionstarted, capital

gains and income went back to normal levels, andthe erosion in the sales tax was noticed. For twoyears in a row, 2001 and 2002, revenues decreasedfor the first time since the 1930s.”

While moderate revenue growth has returned atabout a rate of 6 - 7%, expenditures are increasingat a higher rate than that, Essig said.

For example, the Department of CommunityHealth (DCH) has projected it needs $2.35 billionto maintain its level of service because more peopleare enrolling in Medicaid every day. The governorhas asked each department to prepare a budgetthat is 97%, 100% and 105% of last year’s budget.Even if DCH receives 105% of the current statebudget and its expected federal funding, it will fall$170 million short of what it needs to deliverservices, so cuts will need to be made.

“In the ‘80s and ‘90s, about 5.9 cents of everydollar we earned went to the state. Now it’s downto 5.3 cents. That causes a budget gap of $1.5billion,” Essig said. “Our needs have increased dueto growth, but we’re asking less of each person.”

While budget cuts can free some money, moststate budgets have already been cut significantly inthe past several years, and not many areas canafford more cutting.

“We need to maintain a culture of excellence,not fund the programs that don’t work and root out

waste. There’s just not much waste. What we haveto decide as the family of Georgia is the role of ourstate government and what we are willing topay for and revise the tax structure to fit.

“It’s very difficult right now to receive additional funding oreven continued funding forexisting programs.”

Essig suggestsadvocating for newrevenue sources mightbe a more effectiveway to fund servicesfor people withdisabilities who are onthe waiting lists.

“I’m not suggestingwe tax food or medicine,but we could tax servicesused by people in upperincome brackets, such as lawn care,hair cuts, accountants or lawyers,” he said.

Essig also pointed out that Georgia losesbetween $300 - $400 million per year of potentialrevenue because it does not have a sales tax onitems purchased over the Internet, and it losesabout the same amount from corporations takingadvantage of loopholes that should be closed.

“If we don’t do something about revenues, we can expect continued budget cuts for the next three to four years,” he concluded.

For Brian De Chant and the 5,516 otherGeorgians on the waiting lists, that is a long time to wait. ●


2481 2825How Many People Are Waiting?

Short-Term Long-Term 179Independent Care Waiver

Traumatic Brain Injury32

FY05 BudgetState of Georgia

The problem is worsenedby the fact that Georgia is facing a budget gap of $1.5 billion . . .

W hile Alan Essig suggestsadvocates consider a long-termfight for new sources ofrevenue to fund their needs,the Governor’s Council on

Developmental Disabilities has identified severallegislative items that require advocates’ immediateattention.

These agenda items are gathered by the staff and me, with input from other advocates,throughout the late summer and early fall as theagencies develop their budgets, and issues emerge.

The GCDD’s agenda is divided into “TopPriority” and “Second Priority” levels,indicating the level of focus and advocacythat Council members wish the policy staff to place on the issues.

We recognize that the agenda is amoving target, and the policy staff needsto be able to shift gears or make changesas new issues emerge. When an issuearises during the session on which I believethe GCDD needs to take a position, Icontact the Public Policy Committee, who recommend action, and thisrecommendation goes to GCDD for a vote.

For the 2005 session, most of theitems on the legislative agenda concern thebudget. Georgia will again experiencebudget cuts for the FY06 fiscal year. Thegovernor asked the agencies to submit

three budgets for his consideration; a 97% budgetthat effectively cuts all programs by 3%; a 100%budget that would keep agency allocations thesame as last fiscal year; and a 105% budget thatallows a 5% increase in funding over FY05.

However, for the Department of CommunityHealth (DCH), Medicaid Services, the 105% budgetstill means a cut of 43 million dollars in statefunding due to the growth in Medicaid enrollmentand expenses. Advocates believe that the governorwill select items, both cuts and additions, fromamong these three budget scenarios. Therefore,

we will not really know where to focus advocacyefforts until we hear the governor’s budget addressin January. The legislative agenda items that theGCDD voted on to support in the upcoming sessionare listed on the next page in order of priority.

Change in Legislative Session Schedule

The session begins the second Monday inJanuary, and proceeds for 40 days. A “day” iscounted when both houses are in session. In thepast, lawmakers adjourned to conduct budgethearings the entire second week of the session.The joint house and senate appropriations hearingswere always the opportunity for advocates topresent their input on potential budget cuts oradds. This year, Capitol Impact reports there will beno more early budget hearings. Instead, there willbe “budget briefings” on Jan. 18 and 19, but atthis time, we have no information on who wouldparticipate in those briefings. Senate PresidentPro-tem Eric Johnson and Speaker-elect GlennRichardson have agreed that the General Assemblywill convene as required on Jan. 10 and stay insession for three days. The legislature will be in

recess from Jan. 13 throughJan. 23, andwill reconvenefor the fourthday of thesession on Jan.24 at 1 p.m.

Advocates can stay tuned to Moving Forward, a legislative update issued weekly from January to the end of the session by the GCDD, for otherchanges in the legislative session procedures, and for current news on the budget and activelegislation. Also, check the web site, www.gcdd.org,under the Public Policy heading for fact sheetsrelated to budget and legislative items. ●

FEATURE


“For the 2005 session,most of the items onthe legislative agendaconcern the budget.”

Advocates Needed to

Proposed Budget Items Support and Oppose

By Patricia Nobbie, D.P.A.GCDD Policy Director

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GCDD LEGISLATIVE AGENDA

21Top Priority Items1. Oppose Cuts to Medicaid Services for People

with Disabilities in the Department ofCommunity Health budget. The targeted cuts are as follows:

• Set fixed expenditure cap for the IndependentCare Waiver Program (ICWP) at $50,000. Thisreduction will potentially affect 116 personswhose average annual expenditures currentlyexceed this cap. ($1.1 million*)

• Cap eligibility for the Mental Retardation WaiverProgram (MWRP) at two times SSI ($13,248 peryear). Individuals on the waiver program whowork and have incomes that exceed this amountannually will lose their Medicaid eligibility andtherefore their waiver. ($24.6 million)

• Provider Rate Cuts: There is a 3% provider ratecut included in the 100% and 105% budgets,and a 5% cut in the 97% budget. This cutcomes on the heels of a 10% cut in the FY04budget. Rates are protected for nursing homes,hospitals and pharmacy providers. ($41.8 millionfor 5% cut)

• Elimination of emergency adult dental services. ($7,165,753)

• Elimination of orthotics and prosthetics services. ($1,531,140)

• Elimination of podiatry services. ($1,138,540)

• Elimination of hospice care. ($10,328,171)

* figures are state dollars to be removed from thebudget, and do not reflect the loss of federalMedicaid dollars

2. Support budget request for waiver slots in theDepartment of Human Resources budget.(Unlock the Waiting Lists! allocation)

• The Division of Mental Health, DevelopmentalDisabilities and Addictive Diseases (MHDDAD)proposes paying for 30 slots at $653,846 in the 97% budget, 924 slots at $3,451,129budget, and 1,124 slots at $7,908,713 in the 105% budget.

3. Support increase in provider rates for servicescurrently reimbursed below the Southeasternaverage. (4% at $4,604,295 in the 100%budget, and 6% at $9,208,590 in the 105%budget)

Second Priority Items1. Oppose premiums for the Katie Beckett

Waiver (access to Medicaid for families withmedically fragile children) ($1.5 million)

• This item is only in the 97% budget scenario.The premium proposal was successfully foughtoff last legislative session. In addition, as ofDecember 1, the CMS regional office had notreceived an amendment to the current waiverthat is required to begin charging premiums.

2. Medication Administration: Supportamendments to the Nurse Practice Act thatwould enable direct support staff toadminister certain routine medications to the consumers they support. Staff would be required to complete a MedicationAdministration Certification Program beforebeing allowed to administer meds.

3. Support Amendments to the Election Code.The following changes to the election code havebeen discussed with the Secretary of State’soffice, and we expect to have a bill drafted and prefiled before the session begins.

• Remove term “physical” disability from election code and redefine disability consistentwith the ADA.

• Amend absentee voting language to enablethose who provide attendant care to assist with absentee voting without penalty.

• Amend oath requirement provision so voterswith disabilities who need assistance are nottreated differently from other voters who need assistance.

• Allow poll workers to assist voters withdisabilities in any election, not just federalelections.

• Create provision that requires all election andvoting information available to the public bemade available in accessible formats.

• Consider alternative voting procedures such as curbside voting.

Advocacy for many begins long beforeGeorgia’s legislative

session opens in January; it begins during the election processas the political parties approachtheir respective primaries.

For some, the political process begins even earlier with recruiting candidates that aresympathetic and, better yet, will champion disability and social services issues.

Heidi Fernandez is the chairperson of theAdvocacy and Information Committee of theGovernor’s Council on Developmental Disabilities(GCDD) and the mother of Andrew, a 10-year-oldwith autism. She attended the North Fulton forum and collaborated with a number of people to organize and sponsor a political forum

in Cobb County.“I think we were able to bring

families and legislators together – and for some families, it was the first timethey ever met a legislator,” Fernandezsaid. “For the families, it was thebeginning of building relationships thatwill continue throughout the legislativesession, and it was a great opportunity to educate legislators.”

Twelve candidates participated in the Cobb County forum, and two

legislators who were running unopposedattended just to learn more about the issuessurrounding the disability community. The forumfocused strictly on disability issues and was held in the Cobb County Commission chambers. It wasmoderated by Carmen Burns of 11 Alive News andattracted over 100 people.

Fernandez was pleased with the turnout saying,“Any time we can get parents, care providers and

legislators together, we are being successful. The key is really building those relationships withour legislators; that is the most important thing.

“Give yourself enough planning time,” sheadvises to those considering sponsoring a politicalforum. “Collaborate with other organizations andindividuals in the community; work on getting theword out to as many organizations as you can.”

She took her own advice and worked with 13 organizations to sponsor the Cobb County forum.Sponsors included Georgia Community Support and Solutions, Cobb ARC, Atlanta Alliance forDevelopmental Disabilities (AADD), GCDD, MariettaEnrichment Center,Art & Food,Tommy NobisCenter, East CobbCivitans, MariettaCivitans, AustellCivitans, ProjectBridges, ARC ofGeorgia and theRose Garden/DavenportNeighborhoodAssociation.

Generally the questions and topics focused on the need to move people from hospitals tocommunity residences and the funds needed tounlock the more than 5,000 people on the waitinglists. Other topics included proposed premiums tothe Katie Beckett (Deeming) Waiver and theimportance of early intervention.

Generally, the debate is not whether a candidatewill support programs that help people withdisabilities, but where disability funding issues fallas a matter of budget priorities. To be effective,activists have to assure that their disabilityquestions are well thought out, and that candidatesare measured and considered on their commitmentto the disability priorities.

Steve “Thunder” Tumlin, (R-Marietta) nowrepresents House District 38 and participated in theCobb forum which greatly affected him. “They sent


Grass Roots Advocacy Builds Relationships

“I think we were ableto bring families andlegislators together – and for somefamilies, it was thefirst time they evermet a legislator.”

By Gordon O’Neill

“Collaborate withother organizationsand individuals in thecommunity; work ongetting the word outto as many organiza-tions as you can.”

(continued on page 14)


State SenateSenator John Douglas(R-Covington) District 17404-375-1234

Senator Steen Miles(D-Decatur) District [email protected]

Senator Dan Moody(R-Alpharetta) District 56404-463-8055

Senator Chip Rogers(R-Woodstock) District 21404-656-0188

Senator Steve Thompson(D-Marietta) District 33770-427-2600

The Editor apologizes to anycandidate who was elected andattended one of these forumsand whose attendance wasinadvertently not reported.

State House ofRepresentativesRepresentative Clay Cox(R-Lilburn) District [email protected]

Representative Matt Dollar(R-Marietta) District 45770-485-1946

Representative Earl Ehrhart(R-Powder Springs) District 36770-437-7536

Representative Harry Geisinger(R-Sandy Springs) District 48678-777-6010

Representative Rich Golick(R-Smyrna) District 34770-319-7200

Representative Terry Johnson(D-Marietta) District 37770-432-7028

Representative Jan Jones(R-Alpharetta) District 46404-656-0137

Representative Gene Maddox(R-Bainbridge) District 172229-377-1812

Representative Randall Mangham(D-Decatur) District 94404-525-0100

Representative Robert Mumford(R-Conyers) District [email protected]

Representative Don Parsons(R-Marietta) District 42404-656-0314

Representative Tom Rice(R-Norcross) District 51404-656-0325

Representative Ron Sailor, Jr.(D-Decatur) District 93404-656-0137

Representative Donna Sheldon(R-Dacula) District 105404-656-0188

Representative Pam Stephenson(D-Atlanta) District 92404-656-0126

Representative Rob Telheit(D-Cobb) District 40404-656-0202

Representative Steve Tumlin(R-Marietta) District 38770-428-9060

Representative Wendell Willard(R-East Roswell) District 49404-656-0314

Representative Don Wix(R-Mableton) District 33404-656-0254

Candidates Learn from Disability Forums

Newly elected RepresentativeHarry Geisinger (R-SandySprings) attended the forumin North Fulton County inSeptember.

C andidates around the state attended a number of forums sponsored by AADD, Family Connections andother social services organizations. “The disabilitycommunity appreciates the time that legislators andthose running for public office will give us by attending

these forums. They have the daunting task of needing to be awareof and knowledgeable about numerous issues. These forums are anopportunity for people with disabilities and their families to educatethem about their issues of concern.”

The following state senators and state representatives werereported as participating in one or more forums.

us four questions in advance, and you had to doyour homework for the forum,” he said. “I was notaware of the waiting lists until I did some research,and without that meeting, I would probably never

have brought myself up to date onthese issues.”

Even with a close family memberteaching special education, Tumlinadmits, “My awareness quadrupled,and I was impressed that not onlyadvocates were there but people with special needs were there, too.

“You can talk to all thelegislators and see that everybody’sheart is there,” Tumlin said. “We

need to give the needs for these special people aspecial place in the budget.”

Sen. Steen Miles (D-Decatur), who covered anumber of disability issues when she was a reporter

for 11 Alive News, participated in the DeKalbCounty forum. “The disability community is theonly one any of us can belong to on any given day.It cuts across race, age, socio-economic status,”she said.

With the budget process already started for thenext year, Miles has asked for funding for a numberof projects for people with disabilities, including arespite center in Rockdale County and a foundationthat provides scholarships for people with physicaldisabilities.

“We have to make certain we advocate, support and take care of people’s needs. It’s our responsibility to do so,” she said.

This past year, the disability community was

quite active increating andparticipating incandidate forumson the locallevel. Throughits Partners inPolicymakingleadership classand alumni, the AADD sponsoredfive different candidate forums and encourageddisability activists to participate in forumssponsored by other social services groups such asFamily Connections. Dave Blanchard, public policydirector of AADD, said, “When disability issues areconnected to larger issues that the communitycares about, there is a much better chance that we can be at the table with our issues.”

AADD even provided grants to help peopleorganize political forums, and GCDD developed a 23-page “Guide to Hosting Forums” to help people puta successful forum together. The strategy paid off,allowing the disability community to connect withother organizations and legislators across the state.

Newly elected Rep. Gene Maddox (R-Bainbridge) of House District 172, attended aFamily Connections forum in Bainbridge. He isenthused about representing his constituents in thestate house and encourages people with disabilitiesto contact their legislators and get them involvedin their issues.

“I’ve already been contacted by two youngboys, one I met at the Bain Company and one Imet at Family Connections (two separate forums),and I am alreadytrying to helpthem,” he said.“At the forum,listening topeople, I realizedthat people withdisabilities needhelp, and I am forhelping peoplewho need help.”

His calendaris now full of meetings with other organizationsand after listening to so many issues from so manypeople, he realizes that issue after issue concernsthe budget. As the economy turns around, Maddoxwants to be sure people with disabilities get theirshare of the new tax revenues. He concluded bysaying, “My heart is sad for people who need helpand we need to support them as much as we can.”

FEATURE


Lea Goodman (left)shadowed State Sen. Dan Moody (R-Alpharetta) for a full day in the statelegislature as part of her Partners inPolicymaking course.

“My awarenessquadrupled, and Iwas impressed thatnot only advocateswere there but peoplewith special needswere there, too.”

“The disabilitycommunity is the onlyone any of us canbelong to on any given day. It cutsacross race, age, socio-economic status.”

A Guide toHosting Forums for State Senateand Representatives

Developed by GCDD

The political activity extended to GwinnettCounty where Tiffany Fleming and Lori VonSchmeling were part of the team that organized a forum there. Disability-sponsored forums werealso held in Henry and Barrow Counties.

“Through the Partners in Policymakingprogram, we encourage graduates to get involved,”Blanchard said. “The reason behind all of that is to help these parents get to know the legislatorswhen we think they are listening the most.”

Lea Goodman, mother of a son with cerebralpalsy, was a member of the Partners inPolicymaking leadership training class and workedhard on both the North Fulton and DeKalb Countyforums. But she took her classwork to a whole newlevel in the political arena and “had an incredibleexperience.”

As part of the course, she was assigned to find out who her state representative and senatorwere, which led her to State Sen. Dan Moody (R-Alpharetta). She shadowed him throughout a fullday in the state legislature, a day that included ameeting with Governor Sonny Perdue’s aides.

With this initial success, she shadowed asmany politicians as possible as her major project for the course. This gave her a unique opportunityto educate legislators about the issues facing thedisability community, most particularly theimportance of keeping premiums out of theDeeming Waiver program. In addition to Moody,she developed close working relationships withState Sen. David Adelman (D-Decatur) and StateRep. Mark Burkhalter (R-Alpharetta). She said, “I believe it made a difference as part of a greatergrass roots movement.

“I never really thought much about grass roots– it turned my world around,” she explained. “WhatI learned from the AADD course is there is power atthe bottom, there is a lot of power at the bottom.We can do what we did lastyear, keep the programs weneed to keep our kids at homeand unlock the waiting listsfor those in institutions andhospitals waiting to go home.

“Our class’ advocacy atthe capital kept the DeemingWaiver alive, and I thank him(her son Sammy) for what hedid for 5,600 families,” shesaid, crediting her son withher own motivation.

“I just jumped in there and it worked, itworked. I constantly thank Sammy for what he hasgiven our community.” ●

Writing letters to your elected officials is one way toadvocate for change. Shelby Lindsey (left) expressedher frustration with transportation issues pertainingto her job in a petition to Councilman DavidTolleson of the City of Roswell (right).

GRASS ROOTS ADVOCACY


Contacting Georgia Legislators Identify your legislator:http://www.sos.state.ga.us/cgi-bin/locator.asp

Find your legislators’ contact information:http://www.legis.state.ga.us/

Information about the House of Representatives:404-656-5082, 800-282-5800http://www.legis.state.ga.us/legis/2003_04/house/index.htm

Information about the Senate:201 Legislative Office BuildingAtlanta, Georgia 30334404-656-0028http://www.legis.state.ga.us/legis/2003_04/senate/index.htm

“What I learnedfrom the AADDcourse is there ispower at thebottom, there isa lot of power atthe bottom.”

W ith the upcoming legislativesession, each of us has achance to make a difference in the lives of people withdisabilities. Some may choose

to take direct action such as a march, a sit-in or a protest; others choose to participate by gettinginvolved in the legislative process. Both are validapproaches. Both are necessary because theycombine to make a one-two punch.

As a former paid advocate, I cannot stressenough the importance of educating your locallegislators. Remember, many are new in 2005. So

how do we make the best of our chances to reachthese newcomers as well as seasoned lawmakers?

First, and most importantly, get to know yourown state senator and representative early so youwill be a resource for them later. When they think ofdisability issues, they will remember you. All politicsare local politics; if everyone made it a point toknow his or her elected state officials – there areonly two of them — we would have a much strongervoice. Send a letter introducing yourself and congra-tulate them on winning the election. Everyone lovescongratulations! Explain what you can do for them.If you think you are powerless, think again. Bysharing your story, you can help them be attuned tothe strengths and needs of people with disabilitiesand this knowledge will help them become a betterpublic servant. Don’t stop with a letter, however.

Follow up with a phone call to arrange an appoint-ment. Because they get so much mail, it’s importantto actually meet them. Make it brief – no more than15 minutes. During that visit, let them know youwill be available to help them with any issues thatcome up in the session regarding disability. Shareyour story, but don’t overwhelm them with long,drawn out details. The purpose is to begin arelationship that builds over time. Remember you are the expert on disability. If your legislator doesn’thave a family member or friend with a disability, he or she won’t have any first-hand experience.Legislators really need your insight and advice.

Secondly, participate, participate, participate.Here are three strategies that I consider mostimportant for unpaid advocates. Roll up yoursleeves and roll down the halls of the Capitol. Lobbyfor a budget item, piece of legislation or simplymake your presence known. You don’t have to knoweverything about every issue. Part of the role of thepaid advocate is to direct you to where you canmake the most difference. In fact, it strengthens theability of the paid advocate as well as the entiredisability rights movement if unpaid advocates likeyou participate.

Write a letter, email or call your legislatorswhen your advocacy organization asks you to speakout. By taking this action, you are letting legislatorsknow that the message of the paid advocate is themessage of the people at home.

Attend Disability Day at the Capitol. You’ll bestrengthened and inspired by meeting people fromall over the state who care about the same issues.

Each of us could and should be a part of anyone of these advocacy activities. The influence toaffect policy that any paid advocate holds stemsfrom the people he or she champions. For example,you are the power behind the Unlock the WaitingLists! Campaign. We were able to influenceappropriations and state law because we coulddepend on people from Waycross, Blue Ridge,Columbus, Gainesville, Waynesboro and Bainbridgeto call their elected officials. I was a paid advocate;you don’t have to be. Just do your part. ●


Educating Legislators Is Vitalto Advocacy SuccessBy Grace Fricks

Legislative Partnerships or Civil Disobedience?

Grace Fricksis the former director for Georgia’s Unlock theWaiting Lists! Campaign, which advocates forhome and community-based services for peoplewith disabilities. An advocate for 20 years, shereceived the 2002 Advocate of the Year Awardfrom the Governor’s Council on DevelopmentalDisabilities. She is President of AppalachianCommunity Enterprises, a private non-profitorganization helping people start businesses.

C onfrontation is a thing of thepast. This is 2004, a time forpartnerships.” My experiencetells me most advocates arewilling to come to the table at

any time and seriously discuss the issues,but I have not seen too many of ouropponents come to the table willingly.

Partnerships are great as long as thereis mutual respect. Frequently consumergroups usually have to fight to get thatrespect. In most of the productivepartnerships I’ve helped form, we first had to get the attention of our opponents.Translated, that means they had to beconfronted.

Few things cause as much controversyas confrontation. Yet Civil Disobedience(CD) is the main focus of nonviolent directaction movements around the world. Whydo people participate in CD? For some, it’sfor very personal reasons. For others, it’sout of rage, anger or lack of real progresswith electoral politics or “normal” channels.But, the main reason people participate andstay committed to CD is that it works. From the Boston Tea Party, to Gandhi’s SaltCampaigns, to the ‘60s civil rights lunchcounter sit-ins, to ADAPT’s blocking ofbuses and crawling up the steps of the U.S.Capitol, CD has continued to show itsstrength as a vehicle for change.

In the last 10 years, confrontation anddirect action have become popular in thedisability rights movement. Marches, rallies,sit-ins and other CD protests are moral acts.Through open disobedience, we take backsome of the power we have lost to theinstitutions of society and use the power in a nonviolent way to get the opponents’

attention and bring about fundamentalchange. When real change finally occurs,it’s always been about an emotional change,not an intellectual persuasion. Direct actioncreates emotion.

Unfortunately many people still feardirect action. After all, it isn’t somethingyou learn in school or that most parentsteach. Some people want to believeresearch, being nice and normal channelsare enough. Some people don’t want to be involved in the down-and-dirty, labor

intensive work of organizing. Lastly, somepeople are embarrassed by confrontation.Unfortunately for many of them, changebecomes something they resist and fear.Denial and conformity become a way of life.

Personally I don’t think it’s aboutnormal channels and being nice versusconfrontational. A well thought outstrategy must make use of multiple tactics.What becomes critical is making decisionsabout when to use what tactic, if at all.

My conclusion after 25 plus years oforganizing is that confrontation and directaction still work and will be around as longas there are people who demand respectand want to create lasting change. ●


Why It's My Choice:When To Choose Civil Disobedience

By Mark Johnson, M.Ed.

Mark Johnson, M.Ed.is the Director of Advocacy at ShepherdCenter in Atlanta. He has been advocating forpeople with disabilities for 25 years, andhelped form ADAPT (American Disabled forAttendant Programs Today). He has served aspast president of the Fund for SouthernCommunities that supports social change inNC, SC and GA, and has an extensivebackground in independent living.

“

People across Georgia arefighting for the disabilitycommunity. Whether

motivation begins with increasedfunding or changing an existingbill about institutions, advocatesare demanding change frompolicymakers – and they’re notdoing it by standing by quietly.

LegislativeAdvocacy

“Building uprelationships with legislatorsis the key,” said ElizabethAppley, an attorneyrepresenting the JewishFederation of Greater Atlantaon developmental disabilitiesat the Capitol. “The moreyou strengthen thatrelationship, the more they’ll want to help you in the future.”

Dawn Randolph, a fiscalpolicy consultant and analystfor several health and humanservice organizations agrees.

“You have to be visible to get recognized,” shesaid. “Work toward communicating to the peoplethat can make the change and tell them exactlywhat you want them to do and who’s behind it.”

It sounds easy coming from experts ondisability advocacy but can people in thecommunity really help make a difference?

“Everyone has the opportunity to be a leaderand to step up when they’re needed,” saidStephanie Guilloud, development director forProject South: the Institute for the Elimination of Poverty andGenocide.

Accordingto Appley andRandolph,advocacy can beachieved byanyone. “Thefirst step is toclearly identifythe issue,” Appleysaid. The issue she refers to is a matter of legality.Which bill would you like to see changed or howshould funding be increased for a program? Howmany slots should be increased in the next year forthe waiting lists for home and community services?

Once the issue has been identified, it’simportant to know it well. Arguments for andagainst the issue, main talking points and thelatest updates on the issue should all be researched


How to Advocate forLegislative Change1. Identify Your Issue

2. Know Your Issue

3. Network

4. Learn about Legislation

5. Build Relationships with YourElected Officials

6. Establish and Maintain Visibility

“Work toward communi-

cating to the people that

can make the change

and tell them exactly

what you want them to

do and who’s behind it.”

Elizabeth Appley (right) advocates for people andseniors with disabilities at Peach Politics on March9, 2004 with Georgia Secretary of State Cathy Cox(left) and Representative Nan Orrock (middle).

gOn the Threshold of Change By Christina Carlton

Advocacy 101

P

before talking to a legislator. “However, peopleshouldn’t feel intimidated not to advocate becausethey don’t have all the details,” Appley said.

When it comes to advocating though, it’sbetter to do it in a group. “It’s hard to be the lone voice in the wilderness,” Appley pointed out.

The next step after identifying the issue ofimportance is to get hooked into a network ofpeople who are concerned with the same issue.“Contact organizations like GCDD (Governor’sCouncil on Developmental Disabilities), AADD

(Atlanta Alliance for Developmental Disabilities),ARC of Georgia (an organization that focuses on a united advocacy for people with disabilities), DHR (Department of Human Resources), advocacyattorneys and other organizations – they’re themost powerful voices you can have speaking foryou,” Appley emphasized. A few otherorganizations to check out are the Coalition Unitedfor Responsible Budget (CURB), Unlock the WaitingLists!, disABILITY link, the Statewide IndependentLiving Council (SILC) and ADAPT.


I n 1999, Deirdre (Dee Dee) O’Brien of Waycross,Georgia needed information on how to advocate.Her seven-year-old daughter had globaldevelopmental delays and the service coordinatorat Babies Can’t Wait told O’Brien and her husband

that they needed to advocate for Claire’s best interests.Partners in Policymaking by the Atlanta Alliance on Developmental Disabilities helped show O’Brien how to do that.

“It was extremely intense, very emotional and well worth it,” O’Brien said.

For over a year, she learned how to communicatewith decision makers such as legislators and how tonetwork with others locally and statewide for change.O’Brien was impressed by the quality of resources shewas given to learn from.

“They didn’t just have speakers – they had the bestspeakers from all over the United States once a month,from morning until night,” she said. “Our homework wasto write letters and to speak to politicians about issues.”

Most of all, O’Brien learned that advocacy is moreeffective when a group of people with similar issueswork together.

“I used to just focus on my daughter’s disabilities.What I’ve learned is to focus on the community – andwhat affects it and not just my daughter,” she said.

So how is O’Brien, class of 2000, using her Partnersskills today?Currently, she isthe director ofher local ARC andserved as an ex-officio member ofthe Governor’sCouncil onDevelopmentalDisabilities. She

also feels that Partners in Policymaking is an invaluableprogram, but realizes that not everybody can attend and is trying to open other outlets for education.

Her most recent education initiative is local lawtraining for advocates. Members of the ARC arepermitted to sit through law classes at Waycross Collegeto get more detailed information about how the legalsystem works.

Also, as director of the Satilla ARC, O’Brien is becoming more community focused. Under herleadership, membership has tripled in the past year, and the new members don’t all have people withdisabilities in their families.

“We have people joining the ARC and walking withour disability issues that don’t have disabilities, which isvery different than how things used to be,” O’Brien said.

She feels that these people often have more pullwith politicians since they say disability rights are goodfor the community as a whole, and not just a personalcrusade. “You don’t have to have disabilities to care,”she said.

For more information about how Partners inPolicymaking can help you advocate, visit www.aadd.orgor email Dave Blanchard at [email protected]. ●

Teach Me, Please!

Dee Dee O'Brien (left), became the director of her localARC after graduating from Partners in Policymaking.Here, she presents an award to Dr. Paulette Taylor onbehalf of the Satilla ARC.

“I used to just focus on my

daughter’s disabilities.

What I’ve learned is to

focus on the community –

and what affects it and

not just my daughter.”

I

Randolph agreed, “People need to cometogether to help elected officials understand theimportance of services for people with disabilities.”

The next step to effective advocacy is to workwith your organization to find out aboutlegislation. This is the type of information

you’ll communicate to your elected officiallike, “vote yes here,” or “oppose thislanguage.” Most advocacy organizationswill send out related email alerts aboutthe issue at hand. Visitors towww.legis.state.ga.us can find out whatlegislation has been prefiled for anupcoming session or what meetings are being held in advance.

The next step is where people actuallymake advocacy happen. Up to here, it’s

been a research project with occasional meetings.Build a relationship with your elected official or asRandolph puts it, “be visible.” Once contact is

made with your officials, it’s important to stay incommunication with them. “The more youstrengthen that relationship, the more they’ll wantto help you in the future,” Appley said. “It’s notimportant to have all the details, just contactingyour senator and letting him or her know what’s on your mind is the first step.”

But who do you contact?You can find your elected representatives and

senators by visiting www.vote-smart.org andentering your zip code. Appley reminded advocacybeginners that state legislators will change onJanuary 10, 2005.

In addition, Appley suggested that it isimportant to form relationships with the governorand lieutenant governor, the leadership on bothsides of the House and Senate (both Democrat andRepublican) and members of committees that haveresponsibilities for the issue of concern. Of mostsignificance to the disability community are the


“It would be

amazing if every

person just took

the responsibility

to talk to their

elected officials.”

As emphasized by many advocacy experts, starting an organizationisn’t appropriate if one dealing with the issue at hand already exists.However, Dawn Randolph, a fiscal and policy consultant, recommendstaking the following steps if there is no existing organization to join:

● Build a base of people who are interested in the issue● Get informed about the issue● Establish objectives and solutions for the next year● Take action

So how do you take action anyway? Find an identified target to take action against, look for a bill

that needs to be changed or see what services need more funding.Then work toward communicating with the people that can make thechange. “Tell them what you want them to do and who’s behind it,”Randolph said.

Stephanie Guilloud, development director for Project South, works in a capacity where she connects advocates to largerorganizations with existing programs. She suggests checking outexisting organizations rather than “reinventing the wheel.” Then if no one else is dealing with an issue, an organization should be established.

Guilloud concluded that advocacy organizations for peoplewith disabilities are stronger when people with disabilities are active within thegroup. She said, “There are quite a few organizations led by people in the disability community, and that’s a very powerful position to effect change.”

FEATURE

Sample Advocacy Letter

Dear (insert name of legislator):

I have developmental disabilities. I am eligible to

receive state-funded services and supports, but because

of lack of funding, I have been waiting for those

services for (insert how many years on waiting list).

If I do not receive community-based services soon, I

may have to move to a state institution, where it will

cost the state more to support me than it would to

provide services in my own community. I do not wish

to move away from my community, as my family and

friends are here.

Please support the Department of Human Resources

budget request for waiver slots so people like me can

remain in their own communities and have a better

quality of life. Sincerely,

(insert your name)

When Should You Organize?

following committees: Appropriations (money),Health & Human Services, Insurance, Children &Youth and Education.

Randolph noted that talking with your electedofficials is a big first step, but it may be timeconsuming and overwhelming to try to formadditional relationships with committee members orthe governor. “It would be amazing if every personjust took the responsibility to talk to their electedofficials,” she said. “You need to keep the visibilityand communication year round – not just whilelegislators are in session.”

Advocacy EducationAnother amazing tool for effective advocacy

is education. Many organizations offer leadershipand advocacy classes.

“I encourage people to come to advocacytraining, to get hooked up to the developmentaldisabilities alert network, the state web site, theDHR web site and to call their legislator! It’s theonly way to make a difference,” Appley said.

GCDD funds a variety of leadership programs,including Georgia Voices that Count, that it co-sponsors with disABILITY Link; AADD’s year-longprogram, Partners in Policymaking; and othereducational opportunities offered by Project South.

“These programs together do a good job ofbuilding a strong base of educated leaders,”Guilloud said. “They also create a space for leadersand organizers to come together and discusstensions and challenges they face. If there’s not a space to talk about what’s going on, then we won’t be able to continue effectively.”


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910

10 Tips on Talking to Legislators1. Develop a relationship. The key to advocacy

is developing long-term relationships with yourlegislators.

2. Be optimistic and upbeat.

3. Be specific. Keep it simple. Try to discuss oneissue at a time.

4. “Personalize” the issue. For example, if talkingabout funding for community-based services,describe why the issue is important to YOU andyour community. Use personal stories to informthe legislators – they will be remembered.

5. Don’t be argumentative. Don’t be defensive.

6. Remember there is strength in numbers. Work in collaboration with others whenever possible.

7. Provide good info. Give facts. Do not give a lot of materials. Fact sheets, brochures and personalletters are good.

8. It’s important that the legislators can match aface with the issue. A great idea is to wear abutton with your child’s or family member’spicture. Also, include a picture at the top of anyletters with your name and contact information.

9. Volunteer to be a resource contact. Legislatorswill always welcome a constituent who isknowledgeable on a specific issue and is willingto be a local resource contact.

10. Most importantly, always thank them and followup with a thank you letter.

Submitted by Heidi Fernandez, GCDD Board Member

ADVOCACY 101

Stephanie Guilloud holds a strategic organizingworkshop for grass roots leaders at Project South,which she explains is often a different route to getrights for people with disabilities than legaladvocacy, although the two methods often overlap.

(continued on page 22)

OrganizingGuilloud pointed out that advocacy is just

one door in a hall of many doorways toaccomplishing goals in the disability community.

“There are a variety of strategies to changethe system to get what we need – advocacy andorganizing are two of them,” she said. “It’simportant to distinguish between organizing andadvocacy to be able to distinguish how to best go about getting what you want.”

What’s the difference?“Advocacy is doing work to change a system

or a service on behalf of a group of people thatmay or may not be part of the decision making,”Guilloud said.

According to Guilloud, one good example ofadvocacy at its best is Brown vs. Board ofEducation. In its decision, the Supreme Courtruled that racial segregation in schools (amongother places) was unconstitutional. Legaladvocacy landed this case in the Supreme Court.

According to Guilloud, while advocacy usuallyfocuses on a single policy change or budgetaryincrease, organizing has the purpose of educatingpeople on a longer term basis.

Her example of good organizing was theMontgomery Bus Boycott. A very well planned

boycott,AfricanAmericansdid not ridethe buses forover a year,only givingup whenthey wereawarded full racialintegration

on the buses. The party that had organized theboycott sent out communications to thecommunity to bypass the public buses whileputting alternative transportation in place toensure an effective boycott.

Guilloud feels it is important to connecttoday’s struggles with historical struggles to findwhich strategies will best help the disabilitycommunity find equality.

Since many organizations use a combinationof strategies, it is important to “connect theeducation component to a specific action,” she said. ●


“Advocacy is doing work

to change a system or a

service on behalf of a

group of people that may

or may not be part of

the decision making.”

Organizing Basics● Build Your Base

Identify who is most affected, communicate with thecommunity, recruit members, build coalitions, create amembership structure, hold regular meetings02 and create a collective identity.

● Educate Your BaseUse experience and interactive workshops to educatemembers about the issues and help members identify as a collective working for change.

● Choose Your GoalsIdentify the primary goals of the organization or group.Remember: goals are broad statements that describe what a group wants.

● Build a StrategyCreate a strategy based on achieving your immediategoals and preparing a foundation for long-term goals.Strategy is the overall plan to get the person who has the power to give you what you want.

● Implement StrategyDevelop an action plan that includes specific tactics.Each step should build on the last and toward the next toachieve your demands. Include a timeline that integratesfundraising, signing sponsors onto the campaign, mediawork, direct action, marches, education plans, etc.

● Evaluate Your WorkWhether the group wins or loses its short-term demands,evaluate the goals, strategies and tactics to determinestrengths and weaknesses. Use the evaluation process to create the next steps of action.

This list was compiled by Project South. For more information, please visit www.projectsouth.org.

Organizing Basics

Olmstead Decision


T hose who live with developmentaldisabilities know well the story of theOlmstead Decision, and it is heartfelt.The story is a legend of two courageouswomen, Elaine Wilson and Lois Curtis,

both diagnosed with developmental disabilitiesand mental illness, who pursued their hope anddream of returning to the community, and openedwide a door that would change the way thousandswould live out their lives.

Elaine Wilson,53, passed awayDecember 5, atGrady MemorialHospital inAtlanta. She livedfive years free ofinstitutionalisolation in acommunity-basedliving environment made possible by the landmarkU.S. Supreme court ruling known as the OlmsteadDecision which she helped spearhead.

Wilson stepped into history when she andCurtis filed suit seeking release from a life sentenceof institutionalized care. They wanted to return toa community setting. Their doctors agreed it wouldbe healthier for them to do so. But the state ofGeorgia said it would be too costly.

June 22, 1999, the U.S. Supreme court sidedwith the two women. The Olmstead Decisionrecognized that unjustified isolation is properlyregarded as discrimination based on disability and that confinement in an institution severelydiminishes the every day life activities ofindividuals, including family relations, socialcontacts, work options, economic independence,educational advancement and culturalachievement.

Today thousands of Americans have benefitedfrom the trail blazing contribution of ElaineWilson and Lois Curtis. Still many wait.

A developmental disabilities advocate withPeople First of Georgia, Gail Bottoms wrote theirstory into poetry because, she said, “Elaine will be remembered for what she did for us.” GCDDhonors the memory of Elaine Wilson; a pioneer in the nation’s disability rights movement. ●

Disability Rights Community Loses

By Valerie Meadows Suber

~ To Elaine and Lois ~There were two women, Elaine & Lois

In an institution that wasn’t their choice.They wanted out so they used their voice.

To make a difference was their plan,To help themselves and their fellow man.

They hired the lawyers who said “we can,”and went to fight, their future to plan.

Elaine and Lois went through a big fight, to set folks straight and put things right.

To tell institutions to go fly a kite,To live in their community is a God-given right.

They convinced the judge they could live on their own,

Make their own choices and have their own home.Thanks, Lois, Thanks, Elaine.

Your action has made it even more plain.Stand up for yourself, a self advocate be.

There is nothing to lose and everything to gain.So tonight we honor you both

for what you have done.You fought with the system and thank God you won!

August 5, 1999

Gail Bottoms

Former President, People First of Georgia

Wilson stepped intohistory when she and Curtis filed suitseeking release froma life sentence ofinstitutionalized care.

Trail BlazerElaine Wilson (1951-2004)

M useums. Malls. Amusement parks.All come to mind when a tour busis on the move. But what doesequality have to do with it? OnSeptember 30, 2004, the

Governor’s Council on Developmental Disabilities(GCDD) used a tour bus to educate the communityabout the current civil rights movement – disabilityrights. People with various backgrounds joined thetour by special invitation, and learned about themovement and how they could help make adifference in the disability community.

The Making a Difference Discovery Tour kickedoff at the Martin Luther King, Jr. Historic Site inAtlanta with a speaker experienced in more thanone civil rights movement. Kate Gainer of

disABILITY LINK, the center for rights& resources, borrowed the originalslogan of the 1960s civil rightsmovement, “People First,” and appliedit to the disability rights movement.She called out for the community tonotice that people with disabilitiesare in fact, considered unequal andthey are demanding to be treated

like every other member of society.“There’s a ‘60s song that says something about arevolution going on and it isn’t being televised.There is a revolution and it’s not being televised!”

Gainer also discussed the Americans WithDisabilities Act of 1990 to support her point. Theact was established to provide a comprehensiveunderstanding of the prohibition of discriminationof people with disabilities in critical areas such asemployment, housing, education, transportation,health services, voting and access to public services.

“Congress gave the country a two-year grace

period [to adjust] becauseCongress knew the countrywasn’t ready. It was a noveltyto see us on the street, drivingcars, using public transportation.After the 14th anniversary ofthe Act, it’s still a novelty to seeus working . . . to see usfunctioning in society.” Sheattributed that to the media andsociety sensationalizing peoplewith disabilities actuallyworking. “Don’t treat people withdisabilities like they’re special . . . have expectations for us, wehave expectations of you!” she said.

Gainer ended her rally for support by saying, “I was raised to believe in the American dream – to be a productive member of society.”

Destination One: Visitable Neighborhoods

Visitability. Is this a real word? EleanorSmith, the matriarch of an organization calledConcrete Change, explained that this tongue-twister, new enough to be unmentioned in theAmerican dictionary, came out of the disabilityrights movement in England. It refers tohomeowners without disabilities living in housesthat people with disabilities can visit. Manypeople with disabilities have never been able tovisit their neighbors or even relatives because theirhouses don’t have bathrooms on the main floorwith enough space to fit a wheelchair into, andhave entrances with steps and narrow doorways.

“All my life, I lived where I couldn’t go nextdoor . . . until this community was built. It’s been wonderful going next door for the first time in my life,” Smith said.

Insisting that visitable housing is good notonly for people with disabilities, but also foranybody, GCDD Executive Director Eric Jacobsontold of a time when Senator-elect Johnny Isaksonshowed his home to a lineman in the NFL. Whenhe walked through a door, he had to turn sideways.


Destination

By Christina Carlton

“Don’t treat people with disabilities likethey’re special . . .have expectations for us, we haveexpectations of you!”

Equality

2004 MADDiscovery Tour

Kate Gainer ofdisABILITY LINK,kicks off the tour.

Making a DifferenceDiscovery Tourparticipants learnedabout the disabilityrights movement andhow they could helpmake a difference.

2004 MADDiscovery Tour


Ken Johnson, architectfor the renovation at theCentral CongregationalChurch of Christ,explains how their goalwas to allow memberswith disabilities to fullyparticipate in allprograms.

Smith agreed that more typical families wouldbenefit from houses built to be visitable. Parentswith strollers appreciate the no-step entrance aswell as wider doorways when carrying groceries.One homeowner in the community was pleased tohave a visitable home when she hurt herself andwas confined to a wheelchair for a few months.She could navigate comfortably into the front door,through the doorways, and have enough room to fit the chair in the bathroom. Also, if there is abedroom on the main floor, these houses are morevaluable as people can age in place.

Some people however, are voicing theirconcerns. Doesn’t it cost more money to build avisitable house? Smith claims it only costs a smallamount of money; the built-in elements such aswider doors actually make the houses moreattractive and raise the value of homes whenowners are ready to resell. “For six dollars, a door

can be madewider insteadof $600 towiden it later,”she said.

AfterfoundingConcrete

Change, Smithhelped create a coalition that established theEasyLiving Homecm Program. Builders register withthe organization and get a certificate when a homeis built with basic access features. These homesaren’t just visitable – they accommodate peoplewith disabilities who live there. “That’s the kind of housing we need to concentrate on,” said tourattendee, Nancey Green Leigh, a professor in theCollege of Architecture at Georgia Tech.

For more information on these programs, visit www.concretechange.org andwww.easylivinghome.org.

Destination Two: Inclusive Religion

Many places of worship provide various supportfor people with disabilities during their services –but what about the rest of their programming?“Traditionally, people cannot physically get in,” saidJacobson. “Churches have not been programma-tically accepting – they would provide assistance to get through the service, but were not inclusive.”

In a trip to the Central Congregational Churchof Christ, the people on the tour learned about how churches or synagogues can be “Open andAffirming.” The Church’s focus is to includefamilies and individuals of all backgrounds.

Senior Minister Budd Friend-Jones talked aboutthe different cultures that congregate for worship.“There are people that hug . . . people that shakehands . . . and people that bow,” he said, stressingthat the church is inclusive of everybody.

The church wasn’t always so accepting,however. Until abouttwo years agowhen a majorrenovationoccurred, thechurch focusedon acceptance,but hadn’t

consideredpeople with disabilities. When accessibility cameup as an issue during the project, the church’s firstresponse was that they didn’t need to worry aboutit because none of their members had disabilities.They quickly moved from avoidance to acceptancewhen they realized that some former members hadstopped coming because of acquired disabilitiesand an inability to get into the church.

Ken Johnson, the architect for the renovation,helped make the Central Congregational Church ofChrist building accessible. During the planningprocess, Johnson and others decided “the entrancefor people with disabilities should not be separatefrom the main entrance,” an important

Eleanor Smith, the founderof the EasyLiving Homeprogram, leads the tour of these visitable homesfeaturing step-freeentrances, wider doorwaysand bathrooms on thefirst floor (photo at left).

“ All my life, I lived where I couldn’t go nextdoor . . . until thiscommunity was built.It’s been wonderful . . .”

The CentralCongregational Churchof Christ leveled itsparking lot to makeentering in a wheelchairmuch safer for members.

“Churches have not beenprogrammaticallyaccepting – they wouldprovide assistance to getthrough the service, butwere not inclusive.”

consideration when working toward inclusion. The church’s renovations included an elevator,automatic openers for doors, bathrooms with alarger space for wheelchairs, improved fire escapesand perhaps the most significant part of the projecttook place in the parking lot. Originally, theparking lot had been equivalent to a roller coasterwithout brakes for people who use wheelchairs. The church leveled the parking lot to make enteringchurch in a wheelchair a much safer experience.

Today, the church has many members withdisabilities that are able to fully participate in allprograms. However, Friend-Jones claims that they’renot finished yet. “We’re still aware of the barriers in this building and are working hard to improvethem.”

Destination Three: EqualEmployment & Education

Most people have a grocery store down thestreet with a bagger that has a disability. It’s thestandard disability job. But what about people withdisabilities who have abilities to do more? DiannePrindle of Briggs & Associates employment agencyhelps people with disabilities find jobs that suitthem, instead of placing them in a cookie cutter jobfor people with disabilities. “We work hard to find non-traditional work outlets,” she said.

One job candidate, Peter McKinnon, went towork for the Buckhead office of Marsh USA, theworld’s leading risk and insurance services firm.During the job planning process, Julie Christensen,vice president, took an in-depth look at what hewas capable of. “We didn’t want to just createtasks, we looked at the value he could provide,” she

said. According to Christensen, McKinnonfaithfully serves in his capacity ofinventory control, never missing a day.He has his own cubicle and feels likepart of a team. Since Peter was hired,Tom Flynn, VP at the time and the“Champion” of the company says,“They’re [people with disabilities] the best employees you’ll ever have.”

Another success story is anemployment program called Project

SEARCH. The hospital unit where the program wasstarted has increased its employment of two peoplewith disabilities to 56. Briggs & Associates workedwith Barbara Sverdlik, director of nursing for EmoryHealthcare, to bring the Ohio-based program toEmory Crawford Long Hospital in Georgia, which wasjust recently implemented. For more information on

customized employment, see resources on page 28.Where do people with disabilities start? How do

they find out that they are part of the community –not an attachment? Hopefully schools help peopledo this at an early age. Sadly, many students don’tbelieve in themselves and dream about the future,leaving them unprepared for the commencement of the rest of their lives.

However, GCDD’s Project of National Signifi-cance Grant given to eight schools in the state ofGeorgia is enabling students with disabilities to planfor the future. Cindy Saylor, the project coordinatorfor the grant at Flowery Branch High School, saidthe project has already changed lives.

“They’retaking tre-mendous stepssimply bylearning how to acceptthemselves,”she said.

The one-year-old programincludes a self-determination class called Steps,individual Futures Planning sessions and an after-school Partners Club.

During the weekly Steps class, students withand without disabilities collaborate to discover how they can apply what they are good at to theirfuture. As a team, they brainstorm ideas on how to make each other’s dreams become reality.

A team of family, friends and a teacher combineto form a Futures Planning team. They meet withthe student who has a disability to brainstorm howto use abilities for future careers, volunteer work,and community involvement. Then, a plan of actionis formed, implemented and evaluated.

The after-school Partners Club gives studentswith and without disabilities a place to interactwith each other. Many friendships have evolved andthe students with disabilities are especially enjoyingtheir social expansion. “The kids with disabilitiesused to sit at a separate table in the cafeteria, “said Lori Oliver, a special education teacher atFlowery Branch. “Now they’re interspersed amongother students.” ●


Tom Flynn, executive vice president and JulieChristensen, vice president of Marsh USA, discussthe value of employing people with disabilities.

Destination EqualityDestination Equality

Most people have a grocerystore down the street with abagger that has a disability.It’s the standard disabilityjob. But what about peoplewith disabilities who haveabilities to do more?

Where do people withdisabilities find outwhat they’re good at . . . that they are partof the community –not an attachment?

Barbara Sverdlik,director of nursing forEmory Healthcare,helped bring theemployment programProject SEARCH toGeorgia.


Self-Advocate Receives Waiver

W hen Susie Edwardswas growing up, the Americans withDisabilities Act didnot exist. She

graduated from high school and attendedcollege, then expected to find a job and get an apartment.

“I started asking for employmentservices at 24 that I should have beenlooking for when I was 15. I didn’t knowto start earlier. VR didn’t know what todo with me,” Edwards said. As a result,she used all the service options she couldwith vocational rehabilitation and wasdetermined to be unemployable. “At 43,I’m still looking for a job,” she said.

That experience led Edwards, who has cerebral palsy, to participate in thePartners in Policymaking class held by the Atlanta Alliance for DevelopmentalDisabilities (AADD) in 2001/2002. “AtPartners I learned how to write a letterto the governor and how to ask forservices,” she said.

Through her Partners in Policy-making experience, Edwards learned more about the options available to her.Edwards, who lives with her parents, alsostarted wondering what would happen to

her when her parents died. “I don’t wantto be a burden on my family. With theIndependent Care Waiver Program (ICWP),I wouldn’t have to go from my parents’dying to becoming my family’s burden,”she said.

In October 2002, Edwards decided toapply for the ICWP. In December of thatyear she was evaluated, then placed onthe waiting list because there was nofunding available for her waiver. Whilewaiting for her waiver to come through,Edwards tried other avenues for supportand services. “Respite hours were adisaster. My respite worker brought her boyfriend to the house,” she said.

She also started advocating forherself and other people with disabilitiesby participating in several lawsuits,including one filed in early 2003 againstthe governor, the Department ofCommunity Health and the Department of Human Resources. The suit challengesthe state’s policies that keep people innursing homes or on waiting lists, insteadof receiving waivers that would allowthem to receive services and supports at home in their communities.

While she can’t say for sure if heradvocacy for herself and others helped

her receive a waiver, in September of2004, Edwards finally received her ICWP,after nearly two years on the waiting list.

And though she’s excited to have herfirst step toward independence, Edwardssaid she still has battles to fight; in fact,the first personal care assistant (PCA) shehired quit before her first day. Edwardslives in Alpharetta, and not many PCAslive there. Other issues have also arisen.

“Now that I have the waiver, I needto know what questions to ask when Iinterview PCAs, what the requirements are for the care givers and how manysupplies of gloves I’ll need in the next six months,” she said. “The casemanagers expect you to know all thisstuff. They need to provide guidelines.”

But Edwards won’t give up on herhard-fought waiver, and will probably endup helping those who receive waivers in the future. “I’d love to create ahandbook of what you have to do afteryou get the waiver,” she said. ●

StraightTalk

Susie Edwards (bottom row, 2nd from left) learned to advocate for herself and others during her Partners in Policymaking class of 2001/2002.

“At Partners I learned how to

write a letter to the governor

and how to ask for services.”


Below, please find furtherresources of informationrelated to the articles inthis edition of Making aDifference magazine.

Governor’s Council on Developmental Disabilities (GCDD)www.gcdd.org 404-657-2126 or 888-275-4233 (ASK-GCDD)

State GovernmentGeneral Informationwww.georgia.gov

Georgia General Assemblywww.legis.state.ga.us/

Georgia House ofRepresentativeswww.legis.state.ga.us/legis/2003_04/house/index.htm

Georgia Senatewww.legis.state.ga.us/legis/2003_04/senate/index.htm

Georgia Governor’s Officewww.gov.state.ga.us/404-656-1776

Georgia LieutenantGovernor’s Officewww.ltgov.georgia.gov/02/ltgov/home/0,2214,2199618,00.html404-656-5030

Department of HumanResourceshttp://dhr.georgia.gov404-656-4937

AdvocacyOrganizationsADAPTwww.adapt.org303-733-9324

ARC of Georgiawww.arcgeorgia.org404-634-5512

Atlanta Alliance onDevelopmental Disabilitieswww.aadd.org404-881-9777

disABILITY LINK www.disabilitylink.org404-687-9175

Governor’s Council onDevelopmental Disabilitieswww.gcdd.org404-657-2126

Project Southwww.projectsouth.org404-622-0602

Statewide IndependentLiving Council of Georgiawww.silcga.org, 770-270-6860Toll Free 888-288-9780TTY 770-270-5671

Budget and GA’sWaiting ListsGeorgia Budget and Policy Institutewww.gbpi.org

Unlock the Waiting Lists!www.unlockthewaitinglists.org

EmergencySupportUnited Way Atlantawww.unitedwayatlanta.org Dial 211 for support

LegislativeInformationProject Vote Smartwww.vote-smart.org 406-859-8683

State Legislator Locatorhttp://www.sos.state.ga.us/cgi-bin/locator.asp

Making aDifferenceDiscovery Tour

Briggs & Associateswww.briggsassociates.org404-290-6860

Central CongregationalUnited Church of Christwww.central-ucc.org404-633-4505

Cobb/Douglas CommunityService Boardwww.cobbcsb.com, 770-429-5000

Concrete Changewww.ConcreteChange.org

EasyLiving Homecm

www.easylivinghome.org770-270-1611

Georgia Department of Community Affairs Housing Initiativeswww.dca.state.ga.us(404) 679-4940

RESOURCES www.gcdd.org

pg.8 pg.10 pg. 12 pg. 18

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Development is an ongoing process frombirth. Although we are born fully formed,there are many changes expected. As adevelopmentalist, I see patients if theirdevelopmental milestones are not following

the “typical” path. To do so, we explore the five spheresof development including cognition, language/learning,fine-motor, gross motor and personal social skills.

Two common issues that surface in the first year oflife are delays in motor development and language skills.These are “red flags” that should be explored

immediately.Because

development is a continuum, we monitor well-described“developmentalmilestones.” Theseare timeframesduring whichchildren are expectedto gain certain skills.

If a child’s skills are not developing as scheduled, weneed to investigate. A developmental disability is adeviation from the normal continuum within any of these five spheres.

I perform a comprehensive neurodevelopmentalassessment on children. This includes a comprehensivehistory, physical and neurologicalexamination. We do a neurodeve-lopmental assessment to identify thechild’s functional level to obtain aprofile of strengths and weaknesses.

Tests may be global, such as theBayley Scales of Infant Development.They may explore specific areas ofdevelopment, such as language, withthe Preschool Language Scale or thePeabody Picture Vocabulary Test. Weexamine nonverbal reasoning skills,with tools like the Columbia MentalMaturity Scale, or eye-handcoordination with the Beery Scales.

After these tests are performed, we have acomprehensive sense of a child’s skills. As necessary, wecan do laboratory tests, including cranial studies, genetic,metabolic and hormonal tests to clarify the diagnosis.

Frequently, children will have global cognitiveimpairment. Alternatively, they may demonstrateprimarily language-based disorders, or more broad based

deficits, that impact on social functioning as well, suchas autism spectrum disorders. We may identify motorimpairments, like cerebral palsy, or behavioral andattentional disorders.

Developmental disabilities are lifelong. The milderthe disability the less likely it will impact significantly as your child matures, but the underlying process maystill be there. Because of this, we must understand thatthere won’t be a “quick fix.” However, there are multipleappropriate therapies available.

My role in treatment is two-fold. I serve as a “casemanager” to assist the family in finding and coordinatingcare so we can get the child “back on track.” The otheris to prescribe, monitor and direct the specific treatmentsto help the child overcome the disability.

For example, children with communication disordersrequire speech/language therapy. We will direct thattherapy and monitor the child's progress. A child withtonal abnormalities and motor impairment requiresphysical therapy. Occupational therapy is utilized fortreatment of motor coordination deficits. This alsoincludes sensory integration therapy, which addressesways to integrate sensory inputs into a cohesive,coordinated motor output.

Psychological intervention to assist the child (andfamily) in coping with the emotional and behavioralramifications of a particular disability is important.Adaptive equipment such as braces, walkers orwheelchairs may be needed, and pharmacotherapy may

be necessary if there are behavioral orattentional issues that are not respondingto traditional psychological techniques.

No one piece of this program willsuffice. A well thought out program must incorporate a comprehensivemultidisciplinary approach.

We are all unique. Even if twochildren have the same geneticallydetermined diagnosis, with similar IQs,they are still different. My goal is to helpyour child reach his/her maximal level offunctioning, by removing the physical andcognitive impediments that may stand in

your child’s way. A disability should not be a handicap. By striving

to reach maximal levels of potential, we can assist ourchildren in becoming the best they can be. That shouldbe your goal as a parent, and that is my goal as aprofessional – to assist you in uncovering the complexitythat is your child, and build skills for a lifetime ofmaximizing fulfillment. ●

Early Testing Helps Determine Best Course of Action

MEDICAL UPDATE

Dr. Alan G.Weintraub is a board-certifiedDevelopmental-BehavioralPediatrician who haspracticed in Metro Atlantasince 1988. He trained at the Albert EinsteinCollege of Medicine forboth his generalpediatrics residency and his developmentaldisabilities fellowship. He sits on severaldevelopmental disabilitiescommittees in the metroarea. His practice covers a diverse populationincluding children withgenetic disorders, cerebralpalsy, autism spectrumdisorders and complexADHD. In 2001, Dr.Weintraub won the Lewis E. Jones MD Awardfrom the Atlanta Allianceon DevelopmentalDisabilities for hiscommitment to the DD population in metroAtlanta.

by Alan G. Weintraub, MD

“By striving to reach

maximal levels of

potential, we can

assist our children

in becoming the

best they can be.”


FEBRUARYFebruary 2Healthy Mothers, HealthyBabies Coalition of GA – 18th Annual Legislative BreakfastAtlanta, GA, 770-451-0020 www.hmhbga.org

February 4-5A New Kind of AutismSpectrum Conference Duluth, GA, 770-451-0954 www.asaga.com

February 7Substance Abuse Day at the Capitol Atlanta, GA, 404-523-3440 www.gasubstanceabuse.org

February 9Early & Periodic ScreeningDiagnosis and Testing:How to get what children needthrough existing & unused MedicaidAtlanta, GA, www.marcus.org RSVP: [email protected]

February 10Inclusion of Students withSignificant Disabilities Kennesaw, GA, 770-423-6577

February 19Dimensions of DyslexiaUnderstanding and PromotingReading Fluency, Atlanta, GA404-256-1232, www.idaga.org

February 24Disability Day at the Capitol Atlanta, GA, 404-657-2126 www.gcdd.org

February 24-25Health Care In CommunitySettings - Theory to PracticeAtlanta, GA, [email protected] www.gcdd.org and click on “2005National Health Care Conference”

February 28Mental Health Day at the Capitol Atlanta, GA, 404-527-7175 x231 www.nmhag.org

February 28How to Facilitate a MAPs Session Kennesaw, GA, 770-423-6577

MARCHMarch 5-8Easter Seals Project Action: 2005 Mobility Planning ServicesInstitute, Washington, DChttp://projectaction.easterseals.comand click on “Training & Conferences”

March 10Oppositional Defiant &Conduct Disorder Atlanta, GA, www.marcus.org RSVP: [email protected]

March 11-13COPAA 7th Nat’l ConferenceAtlanta, GA, 404-607-1600

March 15 & 23Teaching English Language Learners Kennesaw, GA, 770-423-6577

March 242nd Annual “Under OneRoof” Housing ConferenceFort Valley, GA, 478-825-6954 www.ag.fvsu.edu/mainpages/housing.asp

APRILApril 4-6AAHSA Future of AgingServices Conference Washington, DC, 888-508-9441 www.aahsa.org

April 12 & 26Reading Strategies forStudents with Disabilities Kennesaw, GA, 770-423-6577

April 13Vocational & Life Skills Plan-ning for Young Adults with DD.

Atlanta, GA, www.marcus.org RSVP: [email protected]

April 21-22GCDD Quarterly MeetingDublin, GA, 404-657-2126 www.gcdd.org

MAYMay 9-11Nat’l Training Conferencefor Deaf and Hard ofHearing in Government Washington, DC www.dhhig.org/ntc

CALENDAR OF EVENTS UPCOMING CONFERENCESFebruary 24-25Health Care In Community Settings- Theory to Practice, Reducing HealthCare Disparities for People with DDHealth care providers will learn the evolution, challenges andexpectations of health care services for people withdevelopmental disabilities in community settings; examples ofsuccessful programs; strategies of care for people with complexmedical and behavioral issues; how to ensure health careresources are accessible for aging adults with DD; and more.Consumers and family members are encouraged to attend.

S O U T H E R N C O M P A N Y

The 7th Annual Disability Day at the CapitolFebruary 24, 2005

ProudlySalutes


SPONSORSHIPS

Offering integrated, comprehensive, family-centeredservices for:

• children with special needs and • their families

A child with special needs (from birth to age 21)can be referred to a Public Health Program that serves these children by calling:

• the Children 1st Coordinator at your localhealth department at 800-822-2539

• Parent to Parent of Georgia at 800-229-2038or in Atlanta at 770-451-5484http://health.state.ga.us/programs/specialneeds/

DIVISION OF PUBLIC HEALTHFAMILY HEALTH BRANCH

Albany ARC, serving our community since 1963, promotes the general welfare of

people with disabilities and fostersthe development of programs on their behalf.

(229) 888-6852 • (24-hour on-call) • www.albanyarc.org

Albany AdvocacyResource Center

Thanks to OUR SPONSORSfor their Support.

If you are interested in being asponsor for Making a Difference

magazine, please call Christina Carlton @ 770-578-9765

The quarterly magazine of the GeorgiaGovernor’s Council on Developmental Disabilities

Volume 5, Issue 3 • Winter 2005

A dvocates from all over Georgia will meet with theirlegislators February 24 during Disability Day inAtlanta. This year’s event, sponsored by theGovernor’s Council on Developmental Disabilities

(GCDD), will be a prime opportunity to educate new legislatorsabout the issues that affect the disability community.

The day will start with a rally at the Capitol, featuringstories from advocates and legislators, followed by a march tothe Georgia Freight Depot for lunch with legislators. GCDD isalso planning to offer some training on successful advocacystrategies. (Events subject to change.)

Visit www.gcdd.org for more information on this importantday for Georgia’s disability advocates. ●

Governor’s Council on Developmental Disabilities2 Peachtree Street, NW, Suite 8-210Atlanta, GA 30303-3142404-657-2126, www.gcdd.org

Address Service Requested

Join Other Advocates For

Disability Dayat the CapitolFebruary 24, 2005

Documents

MAD Mag Winter 2004gcdd.org/images/GCDD_MADWinter2005.pdf · 2017-07-23 · one expert shares his ideas for bridging the budget gap. GCDD outlines budget and legislative items to