making a difference magazine || summer 2005

GEORGIA GOVERNOR’S COUNCIL ON DEVELOPMENTAL DISABILITIES

Real Homes. Real Jobs. Real Education. Real Influence.

SUMMER2005

www.gcdd.orgwww.gcdd.org

Jerilyn Leverett and her daughter

Victoria

Features10Advocates, State Work to Free ChildrenAdvocacy organizations and stateagencies hope to move childrenout of state-funded institutionswithin the next five years.

20MarchersDemand People BeReleased from In-stitutionsDisabilityadvocates mark Olmstead with marches, rallies and civil disobedience.

23Olmstead: How Far Has Georgia Come?Georgia is moving forward on itsOlmstead Implementation Plan,but some say not fast enough.

7ADA - How itImpacted ChildrenMore integration ofchildren with disabilities is a direct result of manyADA provisions.

16The Hunt for Integrated RecreationMany activities for children are happyto make accommodations so thosewith disabilities can join in the fun.

4GCDD ViewpointCommunity Living is theBest Choice for ChildrenAdvocates join together tomove children out ofinstitutions.

5From the GCDD ChairSupporting Families Keyto Helping ChildrenKeeping children at homecan be done with a littlesupport for families.

6Around GCDDFind out who won GCDD’sawards and how GCDDgrants helped fund projectsfor Georgia’s kids.

8News & EventsSpecial Olympics asuccess; Full Participationadvocates to meet; familyevents planned; Georgianscelebrate ADA; disabilitygroup exhibits art; PublicPolicy fellowship offered.

19Straight TalkFreed man lives hisAmerican dream.

26PerspectivesTwo mothers fight forservices for their sons.

29Medical UpdateEmory opens new facilityfor people with disabilitiesand their families.

DepartmentsIn Each Issue3 Letter from

Governor Sonny Perdue

28 Calendar

31 ResourcesEditorial Cartoon

About Our Cover: Jerilyn Leverett ofDisability Connection in Macon, and herdaughter Victoria were only two of about100 advocates who participated in theLong Road Home March II.

2 Making a Difference • Summer 2005

20

16

TABLE OF CONTENTS23

Photos by Harris Hatcher.

www.gcdd.org 3

FROM THE GOVERNOR

Volume 6, Issue 1 Summer 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 BraggChair

[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

Harris HatcherCover Photography

Michael FaberCartoonist

To Georgia’s Disability Community,

W hen people are given the opportunity to reach their fullestpotential, amazing things happen. A good example of this theoryoccurred last month when the Federal Government recognizedGeorgia for its development of the Mental Health Peer Specialist

Program. Consumers involved in Peer Specialist Programs have accomplished goalsin education, employment and independent living that fewbelieved could ever happen. When barriers and biases areremoved, the human spirit takes over, which results in greatthings happening to improve the quality of an individual’s life.

Georgia’s Mental Health Peer Specialist Program will beused as a national model to pave the way for other statesto follow in the area of Consumer Driven Service Delivery.By utilizing Peer Specialist Programs as a catalyst, we mustnow challenge ourselves to ensure that as many Georgianswith disabilities as possible have the same opportunity toreach their potential in community-based settings within aConsumer Driven Service Delivery System.

To facilitate this transformation, two initiatives have originatedwithin the Governor’s Office. First, the Commission for NewGeorgia’s task force on Behavioral Health and Disabilities Service Delivery ischarged with developing recommendations in service delivery that will promotebetter long-term outcomes by using evidence-based or best practices to becomemore efficient. Our second initiative is transformation of our Medicaid system. We are in the beginning stages of this exciting, but difficult work, aimed attransforming our Medicaid program in a way that educates consumers to makebetter health care choices. Many people wonder if Medicaid consumers can makebetter health care choices. I believe that they can with educational strategiestargeted to their specific needs; too often, people live up to the expectations thatpublic assistance programs place upon them. When given the proper tools andobtainable goals, Medicaid consumers and providers in the “New Georgia” will beexpected to make informed choices based upon quality of care and costeffectiveness, with the ultimate goal of improving individual health outcomes.

I am proud of the work and dedication the Mental Health and Disability Communityhas put into this transformation effort. Supporting individuals in the community isthe right thing to do for people, communities and our State’s economy.

Sonny PerdueGovernor

A s this edition of Making a Difference goes to print,we in the disability community celebrate twolandmark events: the sixth anniversary of Olmsteadv. LC and EW and the 15th anniversary of the

Americans with Disabilities Act. Both advance the values thatall people have gifts to share in neighborhoods, towns and

cities across this country. Both reinforce thebelief that all people should live in real homesrather than in segregated places like stateinstitutions or nursing homes.

Today, there are over 140 children under theage of 22 living in nursing homes, private andpublic facilities in Georgia. Georgia remains in thetop 10 in the number of children living in institu-tions. Six years after Olmstead, we still havechildren living away from their families for nocrime other than having a disability. This cannotbe acceptable. We have the experience of closingRivers Crossing and showing how to supportchildren in real homes rather than institutions.

The Georgia Advocacy Office, Institute onHuman Development and Disability, People First of

Georgia, Statewide Independent Living Council, members ofthe State Alliance for Full Participation Team and theGovernor’s Council on Developmental Disabilities have joinedtogether to focus on creating a Georgia where children areprevented from going into institutions or are brought safelyhome from facilities into homes and families.

We are committed to continuing to ask the questions:“Why are kids living in institutions?” “How can we get themout?” and “What will it take so that no child from Georgia everhas to live in an institution or nursing home again?” Over thenext few months and years, you will hear a lot about thisissue. Together, we are producing a video and publications totell the story of those who have left and those who remain.We will be meeting with policymakers, legislators and themedia to discuss how we can find ways to get children home.

We have heard too many stories like the one about a two-year-old who had never been outside because theinstitution staff did not think she could go out and had towait for a doctor’s permission. We won’t be able to tell everystory because some want to keep it secret in the name ofconfidentiality. But you can be sure this coalition willpersevere and grow stronger in its desire to meet our goals.

This edition of Making a Difference is dedicated to thesechildren and telling their stories. It’s about what is needed sothat every child has a safe and loving home outside the wallsof any institutional setting. We will need your help, and Iencourage you to contact any of the organizations involvedand ask how you can get involved.

Let us know what you think about the magazine or anyissue concerning people with disabilities and their families.We welcome the opportunity to print thoughtful responses tospecific articles published in Making a Difference. You canreach me at 1-888-275-4233 or you can e-mail me yourthoughts at [email protected].

GCDD VIEWPOINT


Community Living is the Best Choice for Children

Eric E. JacobsonExecutive Director, GCDD

How To Reach UsLetters should include the writer’s full name, address, phonenumber, and may be edited for purpose of clarity and space.

Contact Our Editor: Valerie Meadows Suber, [email protected], 404-657-2122, Fax 404-657-2132or: 2 Peachtree Street, NW, Suite 8-210, Atlanta, GA 30303-3142

Audio or Large Print Versions:For an audio version of Making a Difference, please contact GCDD. A large font version is available for download at www.gcdd.org.

Subscriptions / Back IssuesVisit us at our web site: www.gcdd.org or call us: 404-657-2126

It is our policy to publish readers’ comments. Contents do not necessarilyreflect the opinions of GCDD, the editors or state government.

“What will it take so that no child

from Georgia ever has to live in an

institution or nursing home again?”

FROM THE GCDD CHAIR

www.gcdd.org 5

T his quarter’s magazine is devoted to children’s issues. We all know that ourfuture is in the hands of our children. Our main focus, as a society, is to buildthe next generation to be better than ours. To do this, we must focus on someimportant issues.

The most important issue for children is supporting families. The family unit is thecore for all our values, where we are taught love and the basic skills of survival. Familieswho have children with developmental disabilities have challenges beyond those offamilies without disabilities. When our son Matthew was 12, he said families of childrenwith disabilities are blessed because the family has to have more love in it than otherfamilies. It requires a level of devotion and determination that is so very different fromfamilies who do not have children with disabilities.

However, the divorce rate among families of children with disabilities is very high.Randy and I have been married 32 years, and there have been times when it was verystressful. Scott took so much time to care for, it left no time to build and maintain arelationship. Without the support of Scott’s grandparents, I don’t know if we could havesurvived. Randy often said that Scott was a wedge and Matthew was the glue that held usall together. Family support must be a priority. We did not have the availability of familysupport 20 years ago when I was diagnosed with lupus and was in need of major surgeryand Pappaw had a heart attack. We were advised that Scott would need to live atGracewood. We opted instead for the Autism Group Home in Riverdale. After living therefor a while, it took Scott four years before he would sit next to me and show me affection.With just a little bit of support for our family, Scott would not have gone to the grouphome. We must stay devoted to the task of supporting families through Family Supportand Natural Support Enhancements and continue working with the Family ConnectionCollaboratives in each Georgia county.

The second most important thing we can do for our youth is to educate them.Throughout my last 13 years with GCDD, education has been a priority. Real education,the kind that not only teaches the skills of living independently, but also teaches thebasics, is imperative. A woman from Macon told us she went to school until she was 21and upon leaving school found she could not get a job or further training because she wasnever taught to read. She learned to cook, make her bed and clean her home, but not toread. She enrolled in adult literacy classes, went on to the vocational technical schoolwhere she learned to read and is now successfully employed. We need to recognize the NoChild Left Behind program needs a lot of support and educators need a lot of flexibility inteaching children with differing ways of learning. This is not a cookie cutter program, andour teachers need all of the help we can give to help our children succeed and learn.

As my term as chair of the Governor’s Council on Developmental Disabilities comes toa close, I challenge each of you and the great state of Georgia to continue supportingfamilies, children and adults with disabilities to lead Real Lives, have Real LearningOpportunities, work in Real Jobs and have Real Homes, Real Friendships andRelationships, while maintaining Choice and Control over their lives.

Supporting Families Key to Helping Children

A TREMENDOUSthanks and

ACCOLADES to the

devoted GCDD stafffor the untiring work

that is done EVERY day

in advocating for

systems change and

improving the lives of

families and PEOPLEwith disabilities.

Lynnette Bragg

Chair, GCDD


AROUND GCDD

The Georgia Governor’sCouncil on DevelopmentalDisabilities has recently

awarded grants to organizationsthat provide information onadvocacy and resources forchildren with disabilities to thecommunity. There were fourlarge grants distributed thisyear, the Georgia Advocates for Rights for Children’sHealthcare, the Baldwin ServiceCenter, the Flint River AreaBarrier Busters and theSouthern Juvenile DefenderCenter. All of the organizationsused the grants to provideknowledge and information to the community aboutdevelopmental disabilities.

Georgia Advocates for Rights forChildren’s Healthcare provides support tomedically fragile children. Beginning as asmall group who has always been assistedby the Georgia Advocacy Office, the Georgia ARCH has beenlearning the ways ofadvocacy as they go. With the grant money fromGCDD, Georgia ARCH wasable to reach legislatorswith informative DVDs andinserts about medicallyfragile children and theneed for Medicare to carefor the children.

Pam Moore at GeorgiaARCH, said,“We never could have reachedout to the legislators like we did withoutthe funding.”

The 300 DVDs that were sent outhave received an enormous amount ofpositive response. The money helped theGeorgia ARCH get rolling with advocacy,and they now are able to take the nextstep to forming legislation.

The Baldwin Service Center inMilledgeville used its grant to form analliance called the No Boundaries Club thatworks closely with students who are insororities and fraternities at GeorgiaCollege and State University. The studentsand the center are currently workingtogether to perform puppet shows in thirdgrade classrooms. The child size puppetsteach third graders about developmentaldisabilities and how to respect people withdisabilities. The puppets have variousdisabilities and also each have a siblingpuppet that demonstrates what life is likeif a family member has a disability. Withthe money from the GCDD grant, theBaldwin Center and the college studentshave been able to obtain the materialsneeded to begin the puppet shows in theupcoming fall school year.

The people of Cordele and CrispCounty are isolated due to physical andattitudinal barriers. The Flint River AreaBarrier Busters (FRABB) recruited andtrained high school students with andwithout disabilities to promote awarenessof disability issues and create a moreaccessible community. FRABB membersmodeled leadership and self-advocacyskills and provided opportunities thatpromote students as future leaders.

The SouthernJuvenile DefenderCenter at EmoryUniversity used itsGCDD grant to create aspecialized web site todisseminate informationabout best practices toindividuals withdisabilities and theirfamilies. They also

worked to increaseinformation and support about consumer-directed care and family support programs.

With the GCDD grants, theorganizations worked hard to promoteacceptance and support for people withdisabilities by focusing their time onadvocating for others and educating thecommunity about developmentaldisabilities. l

Awards Bestowed on Those Who Make a DifferenceMany Georgians advanced the causes of people with disabilities this year,through advocacy, leadership, the mediaand politics. The Governor’s Council onDevelopmental Disabilities recognized thefollowing people for their extraordinarycontributions to the disability communityJuly 21 in a ceremony during its quarterly meeting.

C. AnthonyCunninghamLeadership AwardLynnette Bragg

Advocates of the Year AwardsRecognizes individuals active inIndependent Care Waiver Program efforts:Greg Harry • Kiley Hayes • Edwin McWilliam • Andreena Patton • Samantha Renfroe • Ashley Rhinehart • Cindy Saylor

Media Professional of the YearTom Corwin from the Augusta Chronicle

LegislatorsLeadership AwardsState Rep.

Jeff Brown(R-LaGrange)

State Sen. SamZamarripa (D-Atlanta)

Read the next issue of Making aDifference for more informationabout these award winners.

Grants Help Children With Disabilities

State Sen. Sam Zamarripa(left) at Disability Day

“ We never could

have reached out

to the legislators

like we did without

the funding.”

www.gcdd.org 7

T his year, as we celebrate the 15th anniversary ofthe passage of the Americans with Disabilities Act,we decided to review some of the provisions of the

ADA that have positively affected the lives of childrenwith disabilities.

ChildcareChildcare programs now may not exclude children

just because they have a disability. Just how much theprovider must do to accommodate a child depends on theresources of the provider. There have been several impor-tant court cases wherein large childcare chains have beenrequired to provide even such extensive accommodationsas tube feeding or catheterization.

Smaller firms have to do “something.” If they arevery small, they may not be able to afford to make theirbuilding wheelchair accessible, but there is no reasonwhy they cannot make program alterations that meet theneeds of children with Down syndrome or a hearing loss.If the centers have a place for changing toddlers whowear diapers, they must be willing to change olderchildren whose disability requires them to continue towear diapers.

These requirements apply to day care and afterschool care programs. Georgia has an excellent networkof inclusion specialists for childcare providers who canwork with individual children, care providers and families.For more information on these specialists call 404-463-0009 or visit www.decal.state.ga.us.

Recreation Programs Both private and public recreation programs are

covered by the ADA and are required to serve childrenwith disabilities. Organizations such as the YMCA orcounty parks may have special programs just for childrenwith disabilities such as wheelchair basketball orswimming for children with developmental disabilities.However, these special programs do not give therecreation provider an excuse to bar children withdisabilities from their regular programs.

Private programs must provide accommodationsbased on their financial resources. So a small ruralbaseball league might not have to build a fully accessiblefield, but it must figure out ways of including childrenwith disabilities in their program. As for county andcity-run programs, size is not important. If they canafford to have any recreation programs, they must includechildren with disabilities in these programs. Both theADA and Section 504 of the Rehabilitation Act requirecity and county programs to serve all children. Thisholds for summer camps, leagues, classes, recreationcenters, etc. All of the programs offered by a city or

county must be available to and inclusive of people with disabilities.

The excuse of “too dangerous” cannot be usedunless there is a high probability of danger. Thisprobability must be applied to each individual childbased on his/her specific abilities. So, a program cannotsay “Children with visualimpairments cannotparticipate in the summerprogram since they mightget hurt during physicalactivities.” That policy istoo broad, and thus, is aviolation of the ADA.

MedicalFacilities

Doctors’ offices arecovered under the ADA inthe same category asrestaurants and hotels(Title 3). This means thata doctor cannot excludechildren justbecause they havedisabilities.Obviously, adoctor maynot be anexpert on aparticulardisability,but they canserve as aprimary care doctor consulting with other specialists asneeded. A practice cannot say, “we do not take childrenwith disabilities.” Based on the size of the practice,wheelchair access should be provided from the parkinglot throughout the office, including the examining table.Sign language interpreters must be provided, whenappropriate, and paid for by the doctor’s office. The staffmust accommodate the child’s need for more time, moreexplanations, etc. Hospitals too, are covered by the ADAand must make special accommodations as needed by theindividual child.

For more information on the ADA, please contactthe Georgia ADA Exchange at 770-451-2340 orwww.gaada.info, or the Southeast Disability andBusiness Technical Assistance Center at 800-949-4232or www.sedbtac.org. l

ADA & CHILDREN

ADA Has ChangedChildren’s Lives

By Nancy Duncan, Executive Director Georgia ADA Exchange

“All of the programs offered

by a city or county must be

available to and inclusive of

people with disabilities.”


NEWS & EVENTS

Special OlympicsGeorgia a Success

Nearly 2,000 athletes competed inOlympic-style events at this year’s SpecialOlympics State Summer Games at EmoryUniversity June 3-5. With the help ofover 1,000 volunteers, the 35thanniversary games were a huge success.Patrick Kerney and Jim Mora of theAtlanta Falcons encouraged the athletes,while the mascots Maximus of theGwinnett Gladiators, Thrash of theAtlanta Thrashers and Homer of theAtlanta Braves performed for the audienceand athletes.

The athletes competed in aquatics,artistic gymnastics, badminton, volleyball

and table tennis. Unified sports wherepeople with and without disabilitiescompete together included volleyball,soccer and tennis. Athletes proudlyshowed off their medals, but as always,everyone left as a winner.

For more info on the SpecialOlympics, visit their web site atwww.specialolympicsga.org or call 770-414-9390.

Full ParticipationAdvocates Meet inWashington

The Alliance for Full Participation(AFP) will host the first ever Summit2005 in Washington DC September 21-23.The Many Voices, Many Visions campaignwill bring together 3,000 peopleincluding lawmakers, advocates, families,people with disabilities and advocacyexperts who are committed to making the

Developmental Disabilities Act forAmericans a reality.

The summit’s mission is to create asocial agenda for the dream of fullparticipation. The theme for this year’sconference emphasizes leadership, self-determination and communitymembership. This year’s summit isdesigned to be a groundbreaking eventand will encourage greater awareness,debate, discussion and unity among themultiple groups in attendance.

Renee Pietrangelo, chair of thefounding steering committee, said, “Weweren’t really sure how big of a turnoutwe would get, but it looks as if it isgoing to be a huge event!”

Teams of stakeholders have beendeveloped to represent each state at theconvention. Once they have establisheda social agenda for the nation, thestakeholders will implement the planswithin each state. The teams are criticalto helping the summit achieve its largergoals of building consensus within statesabout necessary actions and policies atthe state and national level to improvethe lives of people with disabilities.

The AFP has collaborated with theSafe Advocates Becoming Empowered(SABE) Executive Council to develop aplan to move forward together to assurethat the AFP Summit 2005 planned forSeptember fully integrates self-advocatesthroughout the process. Thiscollaboration assures that the Alliance forFull Participation is a productive, long-term process, before and after theSeptember meeting, which willsignificantly improve the quality of lifefor all people with disabilities.

Registration for the summit isavailable online. For information onattending the summit, please visitwww.allianceforfullparticipation.org.

2005

September 21-24, 2005

Hilton Washington and Towers1919 Connecticut Avenue, NWWashington, DC

Special Olympicsparticipants enjoya day of sportsand activitieswhere everyoneleft a winner(photos at left and bottom left).

Photos courtesyAndrew Kornylak.

www.gcdd.org 9

Family Cookout OffersWorkshops and Fun

All Children Are Special is hosting afamily cookout and outing on August 20that will bring together organizationsthat want to enhance the quality of lifefor children and those transitioning toadulthood with cognitive and physicaldisabilities and the family members.

Attendees will receive criticalinformation about programs and resourcesfor their children available throughoutmetro Atlanta. Workshops will hostspeakers from Georgia Community Supportand Solutions, Georgia Parent to Parent,Atlanta Alliance on Developmental Disabi-lities, disABILITY LINK and the Governor’sCouncil on Developmental Disabilities.

In the afternoon, families will enjoyfood, fellowship and entertainment withjazz and gospel performances. CelebrityOlympic Gold Medal Winner Curtis Lovejoywill also be in attendance. All proceedswill benefit All Children Are Special, anonprofit advocacy organization.

For more information on the event or volunteering, contact HelgaMoore at 404-429-5901 or NormaStanley at 770-873-3245.

Georgians Celebrate 15 years of theAmericans withDisabilities Act

This summer marks the 15thanniversary of the landmark passing ofthe Americans with Disabilities Act(ADA). To commemorate this importantmilestone, Georgians are participating inthe “Spirit of the ADA” campaign.

The campaign is a 22-daycelebration of events throughout thestate, ending with a bang on July 26 indowntown Atlanta. The celebration,which will take place from 10 AM - 2 PM,begins at The King Center with a torchrace and concludes at Centennial Olympic

Park and the Georgia World CongressCenter with a commemoration.

The day will be filled witheducational training, disability awarenessand fun and games! All ages of peoplewith and without disabilities are welcometo attend the exciting celebration. Marc Wilkerson with the State ADACoordinator’s Office said the event is“really targeting the youth and seniorcitizens because they can both benefitfrom the education training andawareness as well as the resourcesavailable.” Children without disabilitieswill have an opportunity to experienceworking with assistive technology andsenior citizens will be trained in how tocope with disabilities they mayexperience in the future.

In addition to learning andadvocacy, sporting events, arts and craftsand entertainment are planned. Tocelebrate the momentous occasion, localguest celebrities will make an appearanceto join in the fun. Wilkerson said theevent is meant to be “fun-filled as wellas serve a purpose.”

For more information, contactMark Wilkerson, 404-657-7313 [email protected].

Art Exhibit IncludesDisability Group

The Spruill Art Gallery in Atlantarecently hosted an exhibit titled “LooksGood on Paper.” The display ran from

May 5 to June 25 and included 150pieces of work on, of and about paper.Two of the pieces of art were done bypeople with developmental disabilities.The first piece entitled “Freedom” is acommunal piece of artwork created byBridge to Community, a group supportedby the Cobb-Douglas Community ServiceBoard. The group’s instructor, JimSlattery, also has developmental disabili-ties and created the second piece ofartwork titled “Beginning of Forgiveness.”

All works were hand selected by BenApfelbaum, the gallery director andcurator of all shows. The gallery focusesonly on the pieces of work and does notsegregate artists. Apfelbaum said, “Allworks are judged by their artistic qualityonly; I am not interested in the artists’biography.”

The Spruill Gallery is located at4681 Ashford Dunwoody Road inAtlanta. For more information, visitwww.spruillarts.org.

Apply for the 2006Parent Public PolicyFellowship Program

The Joseph P. Kennedy Jr.Foundation, which supports the creationof national programs for persons withintellectual disabilities and their families,is seeking parents of persons withintellectual disabilities for an intensive,one-year Public Policy Fellowship inWashington, DC.

During this fellowship, the applicantwill learn how legislation is initiated,developed and passed by Congress andwill actively participate in public policydevelopment. Kennedy fellows receivefirst-hand knowledge and experience inthe development of public policy in keyareas such as special education, healthcare and mental health care to improvethe quality of life for individuals withintellectual disabilities.

For information on the applicationprocess, please contact Jill Fosse at301-565-5476. All applications mustbe postmarked by Sept. 1, 2005. l

NEWS & EVENTS

“Freedom” is a communal piece of artworkcreated by Bridge to Community.


When disability advocates

at the Georgia Advocacy

Office discovered 141

children under the age of 22 were

still living in state-run institutions,

intermediate care facilities, nursing

homes and a private facility, they

knew something had to be done.

“The GAO knew of some children and had askedthe state of Georgia for a list of children in state-run facilities,” explained Patricia Nobbie, D.P.A.,deputy director of the Governor’s Council onDevelopmental Disabilities (GCDD).

Once the GAO received the list, it joined withits federal partners, GCDD and the Institute onHuman Development and Disability (IHDD). “It wasa big effort, and we wanted as much influence aspossible to help us change the policy,” explainedGAO Project Director Gillian Grable. “Some stateshave ended the institutionalization of children. We wondered, ‘How can we help the state of Georgiabecome one of those states?’”

The federal partners, along with People First and the Statewide Independent Living Council (SILC)helped successfully lobby for a resolution in theGeorgia House of Representatives in the 2005legislative session.

The Children’s Initiative Resolution (HouseResolution 633) urges the Department of HumanResources (DHR), the Department of CommunityHealth (DCH), the Department of Education (DOE),the Department of Labor (DOL) and the Departmentof Juvenile Justice (DJJ) to present the GeneralAssembly with a plan to provide home and commu-nity-based supports to children under the age of 22who are currently living in state-run facilities and toimplement the plan within five years. The resolution

also calls for the Speaker of the House to appoint anoversight committee to help develop the plan thatincludes people with disabilities, members of thelegislature and members from GAO, GCDD and IHDD.

Georgia Rep. Judy Manning (R-Marietta), who isthe chairman of the Children and Youth Committee,brought the resolution to the House. “Children don’tneed institutions. They need their families and theircommunities. They need attachments so they canbond and gain independence.

“This committee will work together to makesolutions for these kids. The resolution asks thesegroups to come together to come up with solutionsto the waitinglist problems.The committeewill take thelead to offerthe statedepartmentssolutions tosolve problemsand get kidsout of insti-tutions andback into their communities.”

Grable stressed that once children leaveinstitutions it is important to place them in“permanent, loving homes where there is asignificant adult who loves them.”

Support for the Children’sFreedom Initiative

Nobbie said support for the Children’s FreedomInitiative already exists in some of the statedepartments. “Gwen Skinner (director of DHR’sMental Health, Developmental Disabilities andAddictive Disease division) has said publicly that sheis committed to moving these children into thecommunity.”

While the advocacy organizations know at least141 children are in state-funded care, they do not

Participating in the LongRoad Home March II inJune, Victoria Leverettconfirms that childrenwith disabilities makevaluable contributionswhen they live and thrivein their communitiesinstead of institutions.

Work Free Children from Institutions

Advocates, State to

By Valerie Smith Buxtonand Christina Carlton

“Some states have ended

the institutionalization

of children. We wondered,

‘How can we help the

state of Georgia become

one of those states?’”

Gillian Grable, GAO

GCDDGAOIHDDSILC

“Children don’t need institutions.

They need their families and

their communities. They need

attachments so they can bond

and gain independence.”

GA Rep. Judy Manning

www.gcdd.org 11

People First

A Powerful CoalitionAdvocacy organizations came together in Georgiato provide a unified voice for children withdisabilities who are living in state-runinstitutions, hospitals, intermediate carefacilities, nursing homes and a private facility.

GCDD - The Georgia Governor’s Council onDevelopmental Disabilities is the stateplanning council mandated by Congressthrough the Developmental Disabilities Act.GCDD provides resources and a forum forpeople with disabilities and their families toincrease inclusion, independence andintegration within the community.www.gcdd.org

GAO - The Georgia Advocacy Office is a privatenonprofit corporation that works with peoplewith developmental disabilities to secure theirprotection and advocacy. GAO, mandated byCongress through the Developmental Disabili-ties Act, has been designated by Georgia asthe agency to implement protection andadvocacy within the state. www.thegao.org

IHDD - The Institute on Human Developmentand Disability, mandated by Congress throughthe Developmental Disabilities Act, works withothers to improve the quality of life forpeople with developmental disabilities andtheir families through education, research andpublic service within the community.www.ihdd.uga.edu

SILC - The Statewide Independent LivingCouncil of Georgia is a nonprofit organizationthat provides disability information andassistance to seven Centers for IndependentLiving (CIL) around the state. The CILs arenonresidential, community-basedorganizations that offer a wide variety ofservices to people with disabilities and theirfamilies including peer counseling,independent living skills training, individualand systems advocacy and information andreferral. www.silcga.org

People First - People First is a self-advocacy group that is based on the principlesof self-determination and freedom to makeindividual choices. Members of the groupsupport each other while advocating forimportant issues and learning about theirrights and responsibilities.www.disabilitylink.org/docs/people.html

know all of the children’s names or circumstances,Nobbie said. The children could be medicallyfragile or have mental illness or developmentaldisabilities.

GAO is gathering information on the children.“Over the last number of months, we started tomeet these children and get to know their

families,” Grable said. “Essentially, their stories are– ‘When I needed help – either with physical oremotional support for my child – there was noplace to go. That’s when I was advised to placeher into an institution.’ No one is asking theparents what supports they would need to keeptheir children at home.”

Nobbie said DHR’s eventual role will be toassess the children and identify providers in the

community who can support them andtheir families.

Pat Puckett, the executivedirector of the Statewide IndependentLiving Councils of Georgia stressedhow important being in thecommunity is.

“We strongly believe people withdisabilities should be integrated intosociety and included in the worldaround them. It is especiallyimportant to start young becauseeverybody gets used to them and

understands that’s how it should be. Separate isnever equal,” she emphasized.

Summit to Raise AwarenessThe three national advocacy groups – GAO,

GCDD and IHDD, will not only provide input intothe planning process, they will also help fund it,starting with the Children’s Freedom Initiative: ASummit For Change, to be held August 25-26 atthe Atlanta Community Food Bank. “The summitwill raise awareness of the initiative, set forth theproblem and start the work plan,” Nobbie said.

The groups will facilitate meetings betweenthe state agencies and pay for oversight committeemeetings, respite care and travel reimbursement forcommittee members. “We expect the planningprocess to cost about $100,000,” Nobbie said.

In preparation for the summit, IHDD iscollecting stories about children who currently livein state-run facilities, according to its director

Living in aResidential HomeWho: Brad ThompsonAge: 17 years oldSupport: Mental RetardationWaiver Program (MRWP) - ahome and community-basedwaiver for people withdevelopmental disabilities

Brad Thompson lives in a residential home in the communityand is quick to give his mom a smile when she visits. When hewas a young child, he had behavioral problems stemming froma brain injury from meningitis and encephalitis which causedhim to act out against his siblings. His mother, Denise Fuller,

decided that it was best for him to live with another family until hisbehavior was under control.

“When I left him – it was horrible,” she remembers.“In the beginning, I visited him daily, sometimes twice.I drove his caregivers crazy! But they were real patientwith me.” Now, Brad has adapted and enjoys living inthe community and so he still lives in a residential home,even though he and his siblings are older now.

Brad was one of the very first children placed in ahome by the Jessamine Place in Fitzgerald, GA. He haslived with various families for the last eight years withfrequent visits from his own family. The Jessamine Placescreens and trains all applicants, or “live-in companions”before Brad moves in with them.

“We’ve had hard times . . . he’s been with families where it didn’twork out,” Fuller remembers. Now, she said, he’s doing much better.

“This family has made remarkable differences – he’s progressed somuch,” his mom said. “He does sign language, he asks for things, dresseshimself, puts on his socks.” She explained that although Brad doesn’tcommunicate his feelings verbally, he smiles most of the time and isloving and caring.

Fannie Johnson, Brad’s live-in companion, said he has improved hisself-degrading behavior since he moved in seven months ago. “He likes to hug and smile at you,” she observed. l


“When I left him – itwas horrible . . . Inthe beginning, I visitedhim daily, sometimestwice. I drove hiscaregivers crazy!”

FEATURE

MHDDAD Director Gwen Skinner and Dr. Steven Hall,director of the Office of Developmental Disabilities, shareadvocates’ commitments to moving children out ofinstitutions with Mark Johnson, director of advocacy atthe Shepherd Center (left to right).

Brad Thompson enjoys spendingtime with his mom Denise Fuller.

Zolinda Stoneman, Ph.D.“We’re collecting stories across the state that

feature families and children who have been caughtin this situation and been hurt by it so people canhave an idea how this affects real children andtheir families,” Stoneman explained.

While DHR will serve as the lead state agency,the other agencies will also have important roles,and each agency has different funding streams thatmay help support the implementation of the plan.

“The DOE wants to be prepared for 141 newstudents, and the Department of Labor’s VocationalRehabilitation department will need to offer jobsupport to the teens,” Nobbie said.

As part of the resolution, the state agencieswill have to report to the legislature and theoversight committee every year on their progress.And Nobbie said they have to consider the future.“We have to close the back door so more kids don’tgo into institutions and nursing homes,” she said.

Stoneman added, “Families really don’t wanttheir children to leave them. But the state isn’tproviding the support they need to keep thechildren at home. One of the things we learnedwhen we began collecting stories was there werethings that could have happened to keep thefamilies together like behavioral support, medicaland health support or information. None of thefamilies wanted to give up their children.”

Importance of CommunityNobbie feels living in the

community is very important forchildren. “It’s a human right for achild to live in a family and have thesame experiences that other kidshave. Institutions don’t do that.Children who live in institutions don’thave contact from significant lovingothers. In many cases parents canonly visit on the weekend, and thechildren don’t have any toys, picturesor any personal things there,” shestated. “Some children are evenliving on a locked unit.

“These children want jobs and ahigh school education. They shouldn’tbe confined in an institution whereopportunities are so limited,” shestated. “Institutions are no good for people.”

In addition, some children who are currentlyliving in institutions leave the institution to go toschool every day. “If they can go to school, whycan’t they live in a family?” Nobbie asked.

Living with a Birth FamilyWho: Chad RobertsAge: 13 years oldSupport: MRWP;Natural SupportEnhancement - a flexible service forgetting people outinto the community.

G enerally a happy kid, Chad Roberts lives at home with hismom, Kellie Roberts. Chad has autism, is nonverbal andsignificantly delayed in all areas. Communication has beena large problem until recently, when he got a device thathelps him communicate with the world.

Roberts feels that home is the right place for her son to live until heis older, but admits she wouldn’t be able to raise him alone if it weren’tfor the Natural Support Enhancement. “Because of Charlie Coleman at theEmory Autism Resource Center Family Program, we’ve had success inplanning Chad’s day so he can be successful,” she explained.

Since he’s had support from the program at Emory, Chad has followeda structured schedule. When he gets home from school, he refers to apicture schedule which is easier for him to process than words. If Chaddecides he doesn’t want to do an activity that’s on the calendar, he isable to replace it with other pictures that symbolize what he would preferto do. “He has done beautifully with his picture schedule,” his mom said.“He’s almost independent and will complete ‘Grooming Boot Camp’ thisweek.” A year ago, he couldn’t complete the most basic daily living tasks.

Chad is also working with Kim Pisor, an independent behaviorspecialist, at home and at school. “We still deal with behavioral problems;he has rages, and sometimes I know the trigger and sometimes I don’t,”

Roberts explained. Using swimming, horseback riding, gymnasticsand country music videos as rewards have helped her son makebehavioral progress. He’s even earned several rewards at his schoolthis year for “Most Improved Student” and “Student of the Month.”

“He’s going to camp this summer; it will be his first time forovernight camp,” Roberts said, excited and nervous at the sametime. “We’ve set up a social story with pictures from the camp andhave made a calendar for everything so he knows when he’s goingand when he’s coming home.”

Roberts works part time at a group home but doesn’t thinknow is the time for Chad to live in that kind of setting. “They’rewonderful folks, and I see Chad living there when he’s older, buthe’s in school right now. Our goal is for him to finish school whilehe’s here at home,” she commented. “While Chad has very complex

issues, he’s my son – he’s part of a family and we love him.”According to Roberts, her son enjoys learning, going to school and

even waiting for the bus. Although frustrated at times, he’s proud thathe’s learning how to take care of himself and is responsive – rewardingpraise with hugs and smiles.

“He’s doing better now,” she stated. “This is a team effort though. Icouldn’t have done this without the waiver. Chad probably would be in aninstitution if I didn’t have the help I have.” l

Chad Roberts with friend Charlie Coleman,working on leisure and community skills.

Membership in acommunity poolallows Roberts toswim year round.

www.gcdd.org 13

The main challenge to implementing the plan,according to Nobbie, is building a good providercommunity. But she has faith that the stateagencies will work hard to do that. “We feel (DHR)Commissioner (B.J.) Walker is committed to seeingthis plan through. So is Gwen Skinner and(Director of Developmental Disabilities) Steve Hall.”

Stoneman hopes people realize how importantthe Children’s Freedom Initiative is. “Thesechildren are the future of Georgia. We need tofigure out what these families need to make suretheir futures are bright.” l

Living with anAdopted FamilyWho: Christopher HanesAge: 15 years oldSupport: Katie Beckett Waiver -families with incomes too highfor Medicaid receive funds forchildren with chronic medicalconditions and disabilities

C hristopher Hanes’ birth family made a tough decision – adecision to find another family for Christopher who hasKabuki Make-Up syndrome, a seizure disorder, a heart defectand mild autism. Evelyn Hanes, a single 37-year-old womanalso made a decision – a decision to make a family and a

home for herself and for Christopher. Even having contemplated adopting a child with physical disabilities

in the past, when the opportunity of adopting Christopher appeared toHanes out of nowhere, it was quite shocking. “It took me about a monthto decide whether it was the right thing to do and what was God’s planfor me and Christopher? Did this meet my needs and not his needs?” sheremembers. “I tried to look at it in a way to know if it was the rightthing for both of us.”

If the adoption had not worked out, Christopher may have been oneof many other children with disabilities who end up in impersonalinstitutions. However, after miraculously working out insurance issuesthat seemed impossible, Hanes took her nine-month-old son home andnever looked back. A nurse, she was able to give him the daily care heneeded by working weekend shifts and staying home with him during theweek until he was ready to go to school some four years later.

“I had a girl that took care of him for a year [on the weekends] andthen when she went off to school, her parents became like a second setof parents,” she said. “They are very special to us.”

Several years after the adoption, Hanes applied for the Katie BeckettWaiver. It helps cover medications and health treatments that herinsurance doesn’t cover. “I haven’t had to spend money on medication forseveral years, and that is really a blessing,” she commented.

Now a teenager, Christopher enjoys traveling,swimming for the Special Olympics and is a foodconnoisseur of sorts. According to his mom, hischarm will get him far in life.

Christopher, who was not yet an eighthgrader, was not invited on the eighth grade end-of-year field trip. On the day of the trip, heconvinced the teacher in his sweetest voice to lethim go with the class. Soon after, his momreceived a phone call from the teacher letting herknow they were on the way to Stone Mountain.“He talked his way right into it,” Hanes laughed.“And he had a ball and he climbed a mountain!

“We have a great life,” she said. “I can’t imagine him being in asituation where he can’t just get up and go. If I woke him up and toldhim we were going on vacation, he’d be in the car before I could pack.”l

Christopher and his mom share many interests, including travel.

Christopher enjoys spendingtime with his granddaddy.


A Conversationwith GAO’sRuby Moore

By Valerie Meadows Subern

What does it really mean to a child not to have thepresence of even one parent who is consistently there tolove them in a home that is a safe place, a sanctuary, aplace where a child can learn and can make mistakes, andwhere people love you just because you are you?

In an interview with Making a Difference magazine,Georgia Advocacy Organization (GAO) Executive DirectorRuby Moore spoke on the need for a Children’s FreedomInitiative Summit to end the institutionalization of childrenin Georgia. “If not now, when? If not us, who?” she asked.

Can an institution ever be a suitable substitute home for a child?

A staff member just brought home a baby from anorphanage in Russia. She was growing up not knowing howto feed herself – how to use a spoon, knife or fork. Shedidn’t know what it felt like to eat a meal with a family.She was always fed by staff who plopped a metal tray infront of her and fed her. When staff left they went home totheir families. This child didn’t go home with the staff.

There is nothing within an institution that will givechildren the love; there are staff there that care but theydon’t take these children home where they can learn howto do simple things and make simple choices.

What triggered passage of the Children’s InitiativeResolution (HR633)?

Locking people up because of a disability. This needsto be changed – this is one of the most urgent issuestoday. The resolution came about because we felt thisneeded to be brought to the attention of the legislature.

How did the Children’s Initiative Resolution evolve intothe Children’s Freedom Initiative?

Three federal partners, the Georgia AdvocacyOrganization, the Governor’s Council on Developmental

Disabilities and the Institute on Human Development andDisability, got together and said we need to bring thechildren home – we thought about the words thatdescribe what we are doing – we are freeing children whohave been institutionalized.

What is the intended outcome of the GeorgiaChildren’s Freedom Initiative: A Summit For Changeand beyond?

To bring home the children of Georgia who arecurrently institutionalized and change the way we thinkabout supporting children and their families so that wedon’t send any more kids to institutions.

Beyond the August summit the Children’s FreedomInitiative will be a major focus in Georgia for five to 10years or however long it takes.

The Children’s Freedom Initiative: A Summit ForChange will offer what program highlights?

People telling their own stories of how theypersonally came to be institutionalized and ultimatelyfreed. From a family perspective, what it would havetaken or what it did take to bring their child home.

We have nationally and locally known speakers. We will have representation from Georgia’s First Lady MaryPerdue’s Children’s Cabinet. Harriet McBride-Johnson,internationally known activist who was in an institutionas a child will come. We found a three-year-old atCentral; a three-year-old at Gracewood; a baby atEgleston in the intensive care unit. All of these babieshave families that want them.

Plus – key people who have a clear vision of whatfamilies and permanent homes look like for kids, all kids,including kids with disabilities.

Why is this issue important to you?I am a mom to three daughters; one has a

disability. I feel that no child should be institutionalizedbecause they have a disability. Any person who wouldhave to spend a day in an institution would beshocked beyond comprehension. In institutionskids stop crying, they stop walking and theystop talking. This happens to people that don’tgrow up with at least one loving adult who wasthere to create a loving home. This is somethingmost people cannot fathom.

All you have to do is picture your child inthat setting and I cannot.

What will it take to make it possible for allGeorgia children to be in permanent homeswith a family?

Citizens need to know that there arechildren growing up in institutions. Policymakers need torecognize this too. We already have everything we needto make sure children currently residing in congregatefacilities live with families and that in the future no childwill be institutionalized. That’s the outcome we want, andwe want it quickly, but we need to find the political will.

When you look at this issue through the eyes of achild it’s clear: why wouldn’t everybody be coming hometo live with a family? l

Leaving anInstitutionWho: Elizabeth RhodesAge: 19 years oldSupport: MRWP - ahome and community-based waiver for peoplewith developmentaldisabilities

A lmost four years ago, Elizabeth Rhodes went from livingwith her family to living in an institution a few hoursaway. Elizabeth was having behavioral problems thatrequired professional attention. “[The institution] had abehavior specialist that worked with her on self-care and

self-control. She really needed a lot of one-to-one care,” said her mom,Cheryl Rhodes.

However, when Elizabeth was approved to receive Medicaidthrough the MRWP last April, the search for an appropriate communityplacement began. “She was on the list for years!” Rhodes emphasized.According to Rhodes, it was a tedious process to find a provider for herdaughter. “I keep joking that the highlight of 2004 was gettingElizabeth settled,” she said. “It took a lot of time to get the pieces in place.”

This past December, Rhodes moved her daughter, who has moderatemental retardation and a seizure disorder, out of the institution andinto a community setting. Since she moved back into the community,Elizabeth’s problems have noticeably decreased. “She’s so happy all thetime!” her mom said. “She is more involved in her community and has

more choices for leisure time activities. [Hercaregivers] value her as an individual insteadof a consumer.”

Elizabeth was placed into a residentialhome operated by the Consumer’s CareCorporation. She lives with a couple, another“consumer,” and the couple’s young child.According to her mom, Elizabeth loves hernew home where she gets to go out to dinner,Home Depot, or wherever the family goes, andshe especially enjoys playing the big sister.

Rhodes is appreciative of the fact thatElizabeth’s live-in companion takes the role of a mother. “She takespride in Elizabeth’s accomplishments,” she said. It also turns out thatElizabeth’s caregiver used to be a special education teacher and iscomfortable with being a liaison for Elizabeth, her school and her mom.

Rhodes admits that it wasn’t easy parting with her daughter in thebeginning, but things are much better now. “It was very hard at first,”she remembered. “There is good communication though, and a sense oftrust. I really feel like they have my daughter’s best interest at heart.” l

www.gcdd.org 15

Elizabeth Rhodes during a recent visit to her mom’s house.

“She’s so happy all thetime! . . . She is moreinvolved in her com-munity and has morechoices for leisuretime activities.”

CHILDREN’S FREEDOM INITIATIVE

Many parents of childrenwith disabilities feelfrustration that there

is not enough out there for their kids to do. Other parents make a sport of findingrecreation for their children.

Dr. Cheryl Marko, a parent of a child withSpinal Muscular Atrophy in Acworth, GA, knows alot about recreation-hunting. Her daughter, ChessaBirrell, plays soccer, hockey and football, she singsand dances, is a Girl Scout and has a blast atdifferent camps throughout the summer includingGirl Scout Camp, Aviation Camp at the FernbankCenter and Summer Safari Day Camp at Zoo Atlanta.

Most of her sport activities are specificallydesigned for kids with disabilities but others are

inclusive – that is,they weren’tnecessarily designedwith disabilities inmind but the leadershave come up withways to make sureshe can participate.

A License to ParticipateMany parents feel that kids with disabilities

who play in a mixed abilities setting are betterprepared for future integration into the community.However, many of them don’t realize that there areinclusive activities for their kids in theircommunities.

Parents should know that the Americans withDisabilities Act (ADA) prohibits discrimination onthe basis of a disability. According to the National

Center on Physical Activity and Disability (NCPAD),this means people with disabilities have:

1. The Right to the Most Integrated Setting

2. The Right to Participate: The right to registerand participate in recreation or leisure activitiesso long as the participant meets “essentialeligibility requirements” required of all regis-trants such as registering before the program isfull and paying the same fee that others pay.Other essential eligibility requirements may bethe ability to serve in a tennis match or theability to swim if the participant falls off a kayak.

3. The Right to Reasonable Accommodations:Reasonable accommodations (modified play rules or extra staff for management of theactivity) should be provided by the activityorganizer to enable participation as long as theaccommodation does not result in an unfaircompetitive advantage.

4. The Right to Adaptive Equipment

5. The Right to the Same Fees: No sport orrecreation provider shall charge a higher fee, or surcharge, for the cost of accommodations for a participant with a disability.

For a more completelist and explanation onthe rights to recreation,visit www.ncpad.org.

Don’t be aLonely HunterThe first place forparents to start lookingfor inclusive activities iswith their children’sinterests – just like mostparents would. Family-


Inclusion-Oriented

By Christina Carlton

RecreationThe HUNT for

Chessa Birrell earned theSmall Craft badge bygiving others instruction.

“ . . . many parents feel that kids with

mixed abilities who play together

are better prepared for future

integration into the community.”

Archery instructor BarbBonham pulls the arrow back as Chessa Birrell aimsand presses the release button at Girl Scout Camp.

focused publications feature camps and activitiesfor children on a regular basis.

Parents who network with other parents anddisability professionals often find what they needfor their children without as much hassle.

“I do a lot of networking in the disabilitycommunity,” Marko said. “Someone will mentionsomething, and I’ll jot in down and file it away forfuture reference.” She also finds out about campsthat are relevant to her daughter’s disability fromparents and speakers at Muscular DystrophyAssociation clinics and Spinal Atrophy conferences. An organization called Parent to Parent of Georgiaoffers an online forum for people to discuss a largerange of topics related to their kids and a place tonetwork at www.parenttoparentofga.org.

RecreationTactics

According to Marko,two tactics matter themost once she has sightedthe target activity: 1) Beopen and honest about a child’sabilities and disabilities, and 2) Don’ttake “no” for an answer.

“Some organizations give an immediateresponse – ‘of course she’s welcome’ and withothers – you have to work at it,” Marko said. “Astime moves on and people become more aware, weget better accepted. With Fernbank, there was nohesitation.”

www.gcdd.org 17

With a few modifications,Birrell (center) can enjoythe same activities as theother Girl Scouts atDream Catcher Day Camp.

Photos byHarris Hatcher.


For several years, Chessa has attended daycamp with her Girl Scout troop. The counselorswere aware that this year, her age group would berequired to do physical activity to earn a SmallCraft badge. Jeanine Adams, the canoeinginstructor at Dream Catcher Day Camp, contacted

the Girl ScoutCouncil ofNorthwestGeorgia tohave thebadgemodified sothat Chessacould earn it

by giving instruction instead of paddling andthrowing life rings. These modifications were madewithout Chessa’s mom ever having to make a

suggestion. “We don’t turn anybodyaway,” said Kristie Walden, directorof the day camp.

The Georgia Dance Conservatoryin Marietta, GA is also veryaccommodating. “We were inspiredto offer mixed ability classes afterAlex Spitzer, who is a wheelchairdancer and choreographer, alongwith an able bodied dancer,performed an original piece of his atone of our recitals a few years ago,”said Lisa Toups, artistic director andowner. “Through their [mixedabilities] performances, they, in turn,demonstrate to our audiences thatdifferences can not only beovercome, they can becomplimentary and celebrated. Everyyear Chessa’s been in our recitals,her number has been one of themost appreciated in the entireperformance.”

Another community organization across thestate of Georgia that offers inclusive activities isthe YMCA. Each branch is independent so theprograms are not the same across the board, butthey share the same philosophy – to be open to

and to serve people of all abilities. “We try to go out of our way to accommodate

any and all people that we come into contactwith,” said James Mercer, vice president ofcommunications at the YMCA of Coastal Georgia.“It’s not as much a set program as [existing]programs that we adapt to the particular needs ofthe individual.” Delaine Truman of the NorthwestCobb YMCA tries to develop classes for specificdisabilities, like autism and Down syndrome, butdoes as much as she can to accommodate anybodyfor the other 28 children’s programs her branchputs on each year.

The Atlanta Lawn Tennis Association (ALTA)provides free wheelchair instructional clinics forchildren in the spring and fall. Wheelchair tennisrules are the same as standard tennis rules exceptthat the wheelchair tennis player is allowed twobounces of the ball. Kids 16 and up are able to joina mixed abilities league in the summer. The leagueis comprised of doubles matches where each teamincludes one player in a wheelchair.

Marko explained that looking for things herdaughter can be involved in is sometimes tiringand discouraging, but well worth the effort. “If youthink the answer is no, you might stop asking,”Marko advised. “It’s an attitude of let’s see whatthey can do.“ l

INCLUSIVER E C R E AT I O N

for KidsALTA Tennis • • • • • • • • • • • •

• • • Boys & Girls Clubs • • • • • •

• • • • • • Boy & Girl Scouts • • •

• City/County Recreation Programs

• • • • Gymnastics/Exercise Centers

Martial Arts Centers • • • • • • • •

• • • • • • • • • • • • YMCA • •

“Through their [mixed abilities]

performances, they, in turn, demonstrate

to our audiences that differences can

not only be overcome, they can be

complimentary and celebrated.”

Lindsey Armstrong andChessa Birrell recentlyperformed a choreographedrecital together.

FEATURE

T welve years ago, a courtdecision ordered Alan Duvallto leave the institution he hadcalled home for the past 19years. While he did not

advocate for himself, Alan understandsthe importance of living in thecommunity and believes the courtdecision was the best thing that everhappened to him.

Currently, home for 33-year-oldDuvall is a personal care agency residencein Chamblee, GA. He spends his daysworking at the International House ofPancakes, playing video games, going tothe mall, listening to music and attendingchurch. He takes the bus to and fromwork, spends time with his family inGwinnett, and has a witty sense ofhumor. Cheri Mitchell at disABILITY LINKsaid that not only is Duvall a fun lovingguy, but “a great dancer who can do theworm!”

With his good humor and strongheart intact, Duvall described his movingout into the community as a positiveexperience that gave him the ability tocontrol his own life. Duvall explainedcontrol over your life is the hardestadjustment; however, it is the mostfulfilling part of living within thecommunity. For example, Duvall choosesto pay his own rent. He believes thatpaying rent, making his own choices andworking make him more of an Americancitizen than when he lived in theinstitution.

At the time, it was extremely hard forDuvall to leave the institution, the onlyhome he really knew. However, he fullybelieves in letting people lead their ownlives in a community of their choice. Hespends much of his time advocating forothers and sharing his personal

experience as a message that if he can doit, anyone can. Duvall also notes that“communities are much more cost-effective.”

Duvall said that while his personalinspiration comes from God, he hopesthat he can be an inspiration to others bysharing his story and making peoplesmile. A graduate of Berkmar High School,Duvall has spoken on several occasions togroups of people with and withoutdisabilities about the importance of livingin a community. Duvall said a dreamcome true “was speaking at the Universityof Georgia, I love the Bulldogs.” Hebelieves hiscalling is publicspeaking andenjoys fulfillinghis purposewhile making adifference inothers’ lives.

Once out of the institution, findinga place to call home was difficult. Hemoved several times all over the stateuntil finally settling in Chamblee. Hesaid the assisted living home he is in nowis “the best one by far!” Duvall has beenliving with his personal care assistant,Edward Williamson, since 1998.Williamson works hard to let Duvall livean independent life and make his owndecisions.

It is because of Duvall thatWilliamson has stayed in thisprofession. Williamson admires andrespects all that Duvall hasaccomplished, saying, “He is myhero.” l

StraightTalk

Linda Pogue and Alan Duvall at the sixthannual People First Conference.

After Leaving Institution,

Man is Living His American Dream

“Duvall believes paying rent, making

his own choices and working make him

more of an American citizen . . . ”

by Katie Bishop

www.gcdd.org 19


Disability advocates fromacross Georgia resorted tocivil disobedience in their

efforts to meet with GovernorSonny Perdue on the last day ofthe four-day Long Road HomeMarch II June 22 in Atlanta.

The march marked thesixth anniversary of theSupreme Court’s landmarkOlmstead decision whichfound that states wererequired, under theAmericans with DisabilitiesAct, to provide services topeople with disabilities inthe most appropriateintegrated setting. Marchershoped their action wouldcall attention to the

continued needfor funds andlegislationmandating morecommunity-based living tohasten the endto theinhumanity ofinstitutionalizedexistence.Advocates were

disappointed the governor had not followedthrough on promises he delivered after last year’sLong Road Home March, according to SamuelMitchell, one of the leaders of the march.

“Governor Perdue said he or someone from hisstaff would meet with us four times a year. SonnyPerdue – do what you said you would do!” Mitchellexclaimed.

While the governor’s office did meet withdisability advocates once following last year’smarch, no further meetings followed. Zen Garcia,march leader and ADAPT organizer, couldn’t under-stand why the governor did not meet again withthe advocates. “We’re just as important as all theother citizens in Georgia. Our issues are everybody’sissues – anyone can become disabled,” he said.

After a rally at The King Center, the group ofabout 100 disability advocates marched to theCapitol for another rally outside. The group thenmoved indoors, where Abel Ortiz, the governor’spolicy adviser for health, human services, juvenilejustice and veteran’s affairs addressed the group inthe rotunda.

Ortiz revealed he was unable to attend earliermarch events in Augusta and Athens because hewas meeting with the Center for Medicaid andMedicare Services to try to reform the process inGeorgia. “If it’s better to live in the community,why don’t we pay for it with Medicaid dollars?” heasked. As part of the reform effort, the state istrying to make costs more predictable, and will alsoinclude quality rankings for doctors. “This will helppeople make better decisions based on quality andcost,” he explained.

In addition, Ortiz is hoping to take moneycurrently spent on institutions and move it tocommunity care options. “We are committed toworking to get more people into the community,”he stated.

Ortiz was then asked when all these reformswould take place. “We don’t know the dates forimplementation,” he said.

Advocates responded by chanting, “Set thedate! Set the date!”

Kate Gainer, another march leader asked,“Where is the governor?”

By Valerie Smith Buxtonwith contributions from

Katie BishopDemandThoseMARCHERS

Be Releasedin Institutionsin Institutions

DemandThose

Advocates marchedfrom The King Centerto the Georgia State Capitol in Atlanta.

Atlanta photos byHarris Hatcher.

“Our issues are everybody’s issues

– anyone can become disabled.” March Leader Zen Garcia

MARCHERS

Ortiz responded,“We are busy doing the workwe need to do to get people out of institutions.”

Marchers then began chanting “We want SonnyPerdue!” and “Sonny Perdue, where are you?” asthey approached the governor’s office. Severalpeople who use wheelchairs positioned themselvesoutside the governor’s door. The crowd chanted“Free our people now!” and “Get us out! Keep usout! Don’t put us in!” while hoping for anaudience with the governor.

After 20 minutes of chanting and blowingwhistles, one demonstrator, Gwen Evans, of Atlanta,was taken away in handcuffs after falling down infront of the governor’s doorway. She wassubsequently released without charges being filed.

Ten minutes later, the civil disobedience paidoff when the governor’s office set two appoint-

ments, one July 5and one October 5to meet with theadvocates todiscuss theirdemands (seesidebar at right).

The marchbegan June 19 withtwo days in Augustawith rallies and atrip to a state-runinstitution.“Marchers tried tovisit residents atGracewood RegionalHospital, but staff

www.gcdd.org 21

Georgia disability advocates brought public awareness totwo federal bills during the Long Road Home March II June19 - 22: MiCASSA (S. 401, HR 910) – the MedicaidCommunity Attendant Services and Support Act and MFP(S.528) – the Money Follows the Person Act. In addition,marchers demanded from the governor and legislature:

1 That a money follows the person initiative be institutedin Georgia for the purpose of aiding people in nursinghomes and institutions, who want to live in thecommunity, to do so.

2 That the state of Georgia provides multi-year fundingto the centers for independent living for the purpose ofsuch transitions.

3 That the Governor of Georgia takes a position ofsupport for the federal legislation known as MiCASSA.

4 That 1,000 (MRWP - Mental Retardation WaiverProgram) waivers for students aging out of school,adults already on the Waiting List and people ininstitutions be funded. That the ICWP (IndependentCare Waiver Program) receive funding for 173 waivers.That the CCSP (Community Care Services Program)receive funding for 2,000 waivers. We request these be included in the 2007 budget.

5 That the Governor recognizes and proclaims June 22 as Olmstead Decision Day.

6 That Georgia institute a policy which states any personin a nursing home or institution that expresses a wishon the Minimum Data Set to live in the community, begiven information on what’s available and the contactinformation for the local center for independent living.

7 That the names of facilities along with the number ofpersons in the individual facility who have expressedinterest in community living on the Minimum Data Setbe supplied to the centers for independent living anddisability advocacy groups upon request.

8 That an immediate and permanent moratorium isimplemented on the starvation/dehydration of peoplewith disabilities.

community services,R E C O G N I T I O NHIGH ON LIST OF DEMANDS

“We are busy doing the work

we need to do to get people

out of institutions.” Governor’s Policy Advisor Abel Ortiz

Marchers rallied and met with the mayor in Athens.

Athens photos by Bob Herrin.


FEATURE

moved the residents inside and closed the doors,”according to march participant Mark Johnson,director of advocacy at the Shepherd Center.

The march moved to Athens June 21, whereparticipants rallied and met with Athens MayorHeidi Davison. The day ended with a reception andcandlelight vigil at the Institution for HumanDevelopment and Disability, which is housed in theformer institution for children, Rivers Crossing.

Parents of children who lived at Rivers Crossingrecounted how they were only permitted to seetheir children on weekends and how hard that wason their families.

This year’s march was dedicated to GeorgianElaine Wilson, one of the Olmstead plaintiffs, who

died last year.Fellow plaintiff LoisCurtis was honoredfor her role in thegroundbreakingdecision with anaward during therally in Atlanta,which was attendedby self-advocatesfrom all overGeorgia, and evenfrom other South-eastern states.

Matthew Barnes, of People First in Albany,marched in the first Long Road Home March lastyear and came again this year. “We wouldn’t missit, being with other individuals for a single cause,”he said.

Dawn Alford, who lives in Carroll County, butcurrently attends Georgia Tech, said, “I’m asupporter of MiCASSA because it enables me to liveindependently.” MiCASSA is the MedicaidCommunity Attendant Services and Support Act thatwould provide support to people with disabilities sothey could continue to live in the community,instead of in an institution or nursing home.

Provider Peggy Chavis, who is visually impaired,came from Athens, where she is director of theMultiple Choices Center for Independent Living.“We need more awareness and support for peoplewho are in institutions. Everyone deserves thesame quality of life. I’m here to help createawareness that will hopefully make a difference.”

The Long Road Home March II was sponsoredby the DeKalb Chamber of Commerce, DisABILITYLINK, Georgia Advocacy Office, Georgia Voices ThatCount, Governor’s Council on DevelopmentalDisabilities, Handicapped Drivers Services, Instituteon Human Development and Disability, People Firstof Atlanta, Statewide Independent Living Counciland Walton Options. l

March activities in Athens included an Americans with Disabilities Actcelebration and a candlelight vigil at the Institute for Human Development andDisability (above). Kate Gainer made thewishes of the disability community clearto the governor’s office (right).

State Senator David Adelman (D-Decatur) addresses marchers outside the Capitol.

“We need more awareness and

support for people who are in

institutions. Everyone deserves

the same quality of life . . . ”

March Participant Peggy Chavis

W hen Atlanta LegalAid attorney SueJamieson first met

Lois Curtis, she had no idea hernew client would take her all theway to the Supreme Court.

The case, in which Curtis, then later co-plaintiff Elaine Wilson, sued the state to receiveservices in the community instead of an institution,became famous across the country as the Olmsteaddecision. “Not in our wildest dreams did we expectthe case to go to the Supreme Court,” she said.

The issue that caught the eye of the SupremeCourt was a clarification of a clause in theAmericans with Disabilities Act, which states peoplewith disabilities must beserved in the mostintegrated settingavailable. The state ofGeorgia argued that ithad no obligation toserve Curtis and Wilsonin the community, whileJamieson argued forcingCurtis and Wilson to livein an institution inorder to receive serviceswas discriminatory.

The Supreme Courtagreed with Curtis andWilson, and the Olmstead decision was born.

Six years later, states all across the country,including Georgia, are moving people frominstitutions into their communities to comply withthe decision, but it has been a slow process.

Jamieson said instead of moving small groupsof people into the community, she hopes Georgiawill create a plan to move everyone who is eligibleand wants to move into the community.

Currently, there are about 1,096 people withdevelopmental disabilities living in state-run

institutions andintermediate carefacilities. Georgia’sDivision of MentalHealth, Develop-mental Disabilitiesand AddictiveDisease has helped310 people moveinto their commu-nities as a direct

result of initiatives funded to implement Olmstead. “Georgia’s

Department ofHuman Resources isdoing all it can withavailable dollars sopeople who live ininstitutions canmove to thecommunity,” said Dr.Steve Hall, directorof DHR’s Office of

www.gcdd.org 23

Currently, there are about

1,096 people with develop-

mental disabilities living in

state-run institutions and

intermediate care facilities.

Lois Curtis washonored for her rolein the Olmsteaddecision during theLong Road HomeMarch II. Themarch was dedicatedto co-plaintiff ElaineWilson.

OLMSTEAD IMPLEMENTATION IN GEORGIA

Olmstead: How Far Has GEORGIA Come?

DevelopmentalDisabilities. “The key to success is tobuild an effective,efficient and excel-lent communityprovider system.

“Institutionswould not be needed

if the community system was as good as we want itto be,” he said.

Jamieson said that without good providers, “Itwill be an ongoing challenge to keep people in thecommunity.”

Hall stresses that successful implementation ofGeorgia’s Olmstead Plan (which can be found at

http://dhr.georgia.gov – type “Olmstead Plan” in“Search” box and press enter.) depends on a num-ber of factors, including separating Georgia’s wait-ing lists into those who live in the community andthose who live in institutions and ensuring moneyfollows people from institutions to the community.

Jamieson agrees that money must followpeople. “Nothing will be solved until statesredirect money away from institutions,” she said.

Hall described Georgia’s current funding ofservices like this: “Imagine if you get yourpaycheck and $200 is missing,” he said. “Your bosssays he gave the money to the grocery store whereyou normally shop. So you go there to shop, butthey say to you, ‘We already have your groceriespicked out for you.’ You may get some things youdon’t need or want and not get some things thatyou do need.”

Hall said because of the way Georgia’s fundingis structured, this scenario is happening daily topeople with developmental disabilities, especiallythose who live in institutions. To combat thisproblem, the state is rewriting its Medicaid waiverand plans to submit it to the federal government inDecember, in hopes that it will be accepted and put into practice in July of 2006.


W hen most people hear the wordlawsuit, they hear the sound ofcoins clanging. But when Bobby

Henslee hears the phrase Olmsteadlawsuit, he hears the Backstreet Boys, acar engine starting up and the sound ofhis feet pounding on gravel during amorning jog. To him, these are the soundsof freedom. They are sounds he does nothear often because he lives in aninstitution.

A 38-year-old man with mild mentalretardation, Henslee has lived at CentralState Hospital since he was 16 years old.He hopes to leave the institution as partof Georgia’s Olmstead Plan and has beenwaiting several years to do so. To live inthe community, he will need 24-hoursupport and someone to help him managehis finances.

“I don’t like it here,” he said. “I’mindependent and should have rights.” Heexplains that it’s important to be able todo the things he wants to do when hewants to do them, not when somebody

else schedules (or doesn’t schedule) anactivity for him.

Henslee, a graduate of Georgia Voicesthat Count, recently attended the annualPeople First conference. He spoke up forhimself as well as for his fellow residentsat the hospital who couldn’t speak forthemselves. “They should have more rightsto do what they want to do – to takecontrol of their own lives!” he saidpassionately.

Ann Resseau, director for theDevelopmental Disability Division atCentral State Hospital, commends him forhis self-advocacy. “Bobby’s very goodabout assessing people to see if they havepower or clout – to see if they can helphim.”

While he waits for the support heneeds to live in the community, Hensleedreams of moving into a house or anapartment and working as a mechanic. Healso looks forward to jogging, listening tomusic and singing along to his favoritesongs whenever he wants to. l

what doesFREEDOMSOUND LIKE?

“ Institutions would not be

needed if the community

system was as good as we

want it to be.”

Dr. Steve Hall, director of the Office of Develop-mental Disabilities isworking to ensuresupports are in placeacross Georgia so peoplewho want to move intotheir communities havewhat they need to make a successful transition.

By Christina Carlton

Bobby Henslee happily greets his former fostermother in a courtyard at the hospital.

Person-Centered Planning and Care Management

Consistency of Services

Available and Accessible Services

Most Integrated Setting Appropriate to Individual Needs

Collaboration with Stakeholders

Equitable Allocation of Resources Available and

Accessible Services

Most Integrated Setting Appropriate to Individual Needs

Collaboration with Stakeholders

Person-Centered Planning and Care Management Equitable Allocation

of Resources

Available and Accessible Services Consistency of Services

Consistency of Services



The new waiver will allow people withdevelopmental disabilities to have the power tochoose what they need and want, not whatsomeone else thinks they need. If accepted, thenew waiver will help more people move frominstitutions into their communities because thepeople will have more control over how their fundsare being spent.

In the meantime, a change to the currentwaiver went into effect July 1, 2005 that will grantwaiver recipients a little more flexibility to self-direct their services.

“It’s the natural way in a capitalist democracythat people should be able to choose what supportsand services they want. When people can freelychoose their providers, that can create new servicesand supports in communities that can benefiteveryone,” Hall explained.

Services would be determined based on aperson-centered planning process that involves theperson with a disability and members of his circleof support, such as a family member, doctor, friend,etc. Some planning has already been done forpeople who are living in institutions.

Jamieson feels person-centered planning is astep in the right direction, but that many of theresulting plans are too vague. “They should bedefining what supports are needed and who willdevelop them. The plan doesn’t say when or how itwill be implemented,” she said.

According to the state’s Olmstead plan, afterthe planning process, “ . . . the individual shouldreceive services as specified in the assessmentreport or be placed on the waiting list for thoseservices.” However, Jamieson is concerned thatthis is not happening. Instead, she believes peopleare participating in planning sessions, but neverfind out when or if their plan will be implemented.

“The state is obligated to serve people in the

community who want to live in the community,”Jamieson said. Since the Olmstead decision, shehas brought three lawsuits on behalf of people ininstitutions who were waiting for services, and afterfiling the suits, each client was served in theircommunities.

As people wait for services, state institutionsand communities are starting to work together tointegrate people with developmental disabilitiesmore fully into their communities. “Someone maywork all day at a job in their community, but live inthe institution,” Hall commented.

While this scenario may not exactly fit thegoals of Georgia’s Olmstead Plan, it does set thestage for people who are living in institutions tobegin to develop natural supports in thecommunity, which are vital to people as they movepermanently into their communities.

“The enemy is loneliness. Being in thecommunity is not the sameas participation in thecommunity,” Hall stressed.

The partnershipbetween the institution andcommunity support systemscan also help familymembers overcome theirfears about their loved oneliving in the community,which Hall said is one of the biggest challenges toimplementing the Olmstead plan.

“Families are afraid their brother, sister, son ordaughter won’t be safe in the community. We needto assure them their relatives will receive 100% ofthe same benefits they get in the institution in thecommunity and that they will be safe, happy, havefriends and competent help and support in thecommunity.”

Hall thinks a few more years will pass beforeeveryone who wants to move out of institutions isserved, but the state will continue to develop agood network of services and natural supports. “Wewant to make sure people have good choices intheir communities so they don’t end up in privatenursing homes,” he stated.

“We don’t want people to spend their livessurrounded by people who are paid to be aroundthem. We want them to have all the gifts and joywe take for granted in ordinary community life,”Hall said. l

www.gcdd.org 25

“They should be defining

what supports are

needed and who will

develop them.”

Sue Jamieson is concerned thepace of implementing Georgia’sOlmstead Plan is too slow.

“Families are afraid their brother,

sister, son or daughter won’t be

safe in the community.”Director of the Office of Developmental

Disabilities Steven Hall, Ph.D.

HOW FAR HAS GEORGIA COME?


Woman Fights for Appropriate Education for Son

Karen Diamantstein is a 40-year-old single mother of a childwith autism who is nonverbal,has no independent toilet skills,rarely sleeps through the nightand has some behaviors thatrequire constant monitoring. Hisfather takes him every otherweekend and for dinner threeevenings a week, which is heronly respite. She is physicallyand emotionally overwhelmedby her son’s needs, but said hissmile and the sound of hislaughter give her reason to getout of bed in the morning.

By Karen Diamantstein

M y son, Michael, was born June 21, 1995.Following his autism diagnosis in 1997,we established a discrete trial teachingprogram in our home. We hired a team oftherapists who were trained to

implement his uniquely tailored program. He made steadyprogress and, though he struggled to produce speech, hisstrong visual and motor skills showed promise. His abilityto interact with teachers and therapists developed nicely.We continued our home program, plus private speech andoccupational therapy, until we ran out of money.

In 2000, Michael entered The Model Classroom (TMC)at Faith Lutheran. Despite his ability to adapt and enjoyhis play with other children, his functional communicationskills were not improving. The school’s director, MarianJoiner, told us TMC could not provide enough interventionto meet his needs and suggested public school so Michaelcould have daily access to therapy services.

Marian attended our first IEP meeting and spokeabout Michael’s need for daily therapy. She suggested hewas an ideal candidate for errorless learning and discretetrial teaching of specific skills. She also emphasized theneed for professionals who were qualified to teach and usePECS™ and augmentative communication devices soMichael could develop a functional communication system.

It was my understanding that the IEP committeewould follow these suggestions, but little of what Michaelneeded was ever provided by the Cobb County SchoolSystem. I am grateful that, after a bumpy start in aterribly inappropriate placement, Michael eventually joineda wonderful classroom with a loving and caring teacher.But that didn’t ensure the provision of appropriatelydesigned educational programming and services.

Designing a successful teaching program for Michaelrequires a coordinated team of experienced specialists. Hehas unusual scatter in his profile of skills and learningstyles, making implementing a good discrete trial teachingprogram challenging. Any program lacking the requiredlevel of frequency and intensity will not be sufficient.

Since the school system became responsible forMichael’s education, various skill regressions have becomeobvious to everyone who knows him. The conceptspresented to him in school seemed to get simpler, and Ifelt school employees wanted me to accept his limitationsand be satisfied with their well-intentioned efforts.

Michael has lost skills because he has not used thoseskills in any consistent, well-managed educationalprogram. Discrete trial teaching, when properly imple-mented, has been documented to be effective for him.

I provided our school system with evaluations,documentation binders and tapes containing data andvideo of Michael demonstrating mastery of many skills nolonger apparent. I encouraged school system employees toreview this history and explore why he lost these skills.

I have never asked for anything that even begins toresemble the “best” services money can buy in regards toMichael’s IEP. I have been forgiving when mistakes weremade by system employees. After years of struggling withthe system, I have no reason to believe that futureservices would be based on his needs. Our situation mayrepresent a growing problem in public schools.

In spring 2004, I had an opportunity to placeMichael with an educational specialist who managed ourfirst intervention plan. This plan showed more promise inits ability to help Michael master cognitive functions thanany instruction designed by the school system. I asked thesystem to fund this program over the summer and untilMichael could be transitioned to an appropriate classroomplacement. The request was denied.

I think Michael should be in school because it adds arewarding dimension to his life. However, I have no way toverify the appropriateness of his education, and he has noway to tell me what happens during his day. Withoutunlimited and inconspicuous opportunity to observe him atschool, I am at a disadvantage and can hardly participateas an equally knowledgeable member of his IEP committee.

Given Michael’s profile, I doubt any competenteducator or health care professional would disagree that heneeds a full-day, year-round service program. Further, aservice plan that fails to provide sufficient intensity orconsistency by qualified instructional staff is, at best,limiting Michael’s potential and, at worst, interfering withhis ability to derive educational benefit from his services.

If I lived in some other states, my school systemcould place him in a comprehensive, full-day, year-roundprogram at no expense to me. I don’t want to move awayfrom friends and family, but I’m considering it. He deservesappropriate services, and I need to work with schooladministrators who will explore ways to meet his needs.

Cobb County School System’s three years of failure todesign and implement an appropriate educational plan forMichael motivated me to withdraw him from school. I felthe would be unlikely to make any meaningful progress inthe absence of appropriately targeted educational services.

Michael’s educational needs have been neglectedsince he entered public school in 2001. I believe thesystem’s efforts to “not leave Michael behind” are in needof scrutiny. l

www.gcdd.org 27

Joey World

Reneé Pullen and herhusband adopted Joey andhis brother eight years agoand live in Blakeley, GA.Pullen teaches at the localelementary school duringthe day, and she and herhusband take turnswatching Joey in theevenings and on weekends.She feels if she could haverespite care just once in awhile, she would be able tokeep Joey at home.Currently, none isavailable in her area.

By Reneé Pullen

Two Mothers Share Their Struggles to Find

Supports for Sons with Autism

E ight years ago our family eagerly welcomed theadoption of two special boys. The youngest,Joey, was a beautiful, curly haired four-year-old. We were told that Joey was globallydevelopmentally delayed. We thought that

with love and the proper educational care Joey could catchup on what he had missed in his early developmentalyears. If we had seen the big picture in the beginning wewould have run as fast as we could to the far corners ofthe earth. Instead, we now find ourselves running to thefar corners in search of help for Joey and so many otherslike him with families who are in crisis. Joey’s presentdiagnosis is autism and mental retardation. In our ruralarea in Southwest Georgia, we have no support orovernight facilities available. Just finding a respiteprovider for a child like Joey is a major challenge – we’vebeen through six since Christmas. Our family has literallyshut down our world and we live inwhat I lovingly refer to as “JoeyWorld.”

Joey goes to bed about 7:30PM. The first wake up is aroundmidnight, then around 2:00 AMand then again between 4:30 and6:00 AM. He is turning on thelights, running the water in thebathroom, or watching Barney onthe television. I have learned tosleep with one eye open in orderto redirect Joey back to bed sothat he and I can get a few hoursof sleep before the new day begins. Someone has toget up immediately or the damage Joey can do in ashort amount of time is shocking. We put a lock onour pantry to prevent boxes of cereal and any otherfood items from being poured all over the bar andfloor. Joey then moves to the refrigerator where heopens jars of condiments or leftover food and digs hishands or utensils in the jars.

Once we dress Joey for school, he has to be watchedclosely or he will strip naked in seconds. The ride toschool is usually manageable. When we arrive at school Ihold my breath as he and his brother walk to the outsidedoor of his classroom. If he sees other students,especially females, he will run after them to pull their hair,expose himself or curse at them. I verbally thank Godthat we made it and pray that Joey can cope through theday. The afternoon ride home is usually chaotic. Joey is

stressed to the highest point and often goes into a fullrage. He slaps and kicks any part of my body that he canreach. He snatches my hair, spits on me and urinates in hisseat. I have had numerous narrow escapes while driving.

While Joey is at school, he is restrained for mostof the day. While his teachers are willing to learn howto best reach Joey, there aren't any places nearby thatoffer training for autism. I probably know more aboutautism than anyone in this county!

In May, Joey experienced a rage at school andattacked his teacher. As a result, he was sent to CentralState Hospital, where doctors warned us to fight to gethim out or he might regress. And he did start to regress -at home he wears pull ups at night, but in the hospital, hehad to wear them all day. He was kept medicated most ofthe time, and just wasn’t himself there.

Luckily, Joey was accepted by the Marcus Institute inAtlanta for a 16-week program that will

help him learn how to better dealwith his rages. I’m looking for goodresults from Marcus. Unfortunately,since it is a day program, he willhave to stay with a host family whilehe’s there instead of at home withus. We’ll only be able to see him onweekends. We’ll get training theretoo about how to handle his rages.We’re worried that because we don’thave any follow-up care availablenearby, he might have trouble

retaining what he learns at Marcus.My husband and I take turns spending time with our

other children and new grandson. Joey’s brother also hassome learning disabilities, and we are not able to spend asmuch time as we’d like with him because Joey demands somuch of our time. We are physically and mentally drainedand have little time for each other.

We sacrifice ourselves daily for our love for thisspecial child. He is the love of our life, and we absolutelydon’t want to put him in an institution. All we need tokeep him home with us is some respite care once in awhile so we can spend time with each other and our otherfamily members and some follow-up care after he finishesat the Marcus Institute.

Joey did not grow in my womb, but he certainly grewin my heart, and I’m afraid his needs will one day bebeyond what we can do at home without help. l

Our family has literally

shut down our world

and we live in what I

lovingly refer to as

“Joey World.”


CALENDAR OF EVENTS

AUGUSTAugust 20“All Children Are Special”Equipping for Life! A Resource Workshop and Family Fun Fest forthe DevelopmentallyChallenged ChildBrook Run Auditorium and ParkChamblee-Dunwoody Contact: Helga Moore, 404-429-5901or Norma Stanley, 770-873-3245

August 25 - 26Children’s FreedomInitiative: A SummitFor ChangeAtlanta Community Food BankSponsored by Georgia AdvocacyOffice (GAO), the Governor’s Councilon Developmental Disabilities(GCDD) and the Institute on HumanDevelopment and Disability (IHDD)

SEPTEMBERSeptember 21 - 23Alliance for FullParticipation’s NationalDisability SummitWashington D.C.www.allianceforfullparticipation.com

September 29 - October 1Kennedy Center’sAccessibility ConferenceScottsdale Center & Mesa Center for the Performing Arts Scottsdale, Mesa, Arizona Eileen Bagnall at ARTability at 602-757-8118 or 520-631-6253

OCTOBEROctober 7- 9Special Olympics GAState Fall GamesAlbany, GAwww.specialolympicsga.org

October 16 - 18National Black ChildDevelopment InstituteAnnual Conference:

Bridging Culture in aChanging WorldWyndham Palace Resort & Spa Orlando, FLwww.nbcdi.org/conference/35ac

October 20- 21GCDD Quarterly MeetingAthens-East Central RegionHoliday Inn, Athens, GA (Tentative)Contact Kim Person [email protected]

NOVEMBERNovember 1 - 32005 US BusinessLeadership NetworkAnnual ConferencePittsburgh, PAwww.usbln.com/events/conference2005.htm

September 21-23“Many Voices, One Vision”Alliance for Full ParticipationSummit 2005 will bring togetherthose committed to making thepromises in the DevelopmentalDisabilities Act a reality.

Washington Hilton, Washington DCContact: Carol Walsh, [email protected] of GA Contact: Eric Jacobson,[email protected]

www.allianceforfullparticipation.orgUPCOMINGCONFERENCES

www.gcdd.org 29

MEDICAL UPDATE

Emory’s Specialized Genetics Clinics

Dr. Warren with patient Hunter Wilhite.

DR. STEPHEN T. WARRENreceived his Ph.D. in Human Genetics fromMichigan State University and worked at theUniversity of Illinois College of Medicine and atthe European Molecular Biology Laboratory inHeidelberg. In 1985 he joined the faculty ofEmory University School of Medicine where heholds the William Patterson Timmie

Professorship of Human Genetics, as well asProfessorships in Biochemistry, Pediatrics andthe Winship Cancer Institute. Warren is a FullInvestigator of the Howard Hughes MedicalInstitute, and he founded the Department ofHuman Genetics at Emory School of Medicine.

A Diplomat of the American Board ofMedical Genetics with specialty certification in

clinical cytogenetics and clinical moleculargenetics, Warren is a member of the AmericanCollege of Medical Genetics, the Human GenomeOrganization and the American Society ofHuman Genetics (ASHG). Warren has wonnumerous awards, including the ASHG’s WilliamAllan Award, considered the highest award inhuman genetics.

By Stephen T. Warren, Ph.D., Chairman

T he Department of Human Genetics (DOHG) atEmory University is bridging benchmark geneticresearch with clinical treatment. This departmentof the Emory University School of Medicine wasfounded in 2001, through restructuring the

existing Department of Genetics and incorporating the entireDivision of Medical Genetics. The DOHG believes that gaininginsight into a disease by identifying a causal gene can leadto new approaches with therapeutic interventions.

The majority of our research focuses directly on humandisease, and the Department hasmajor strengths in neurogenetics,and translational research. TheDOHG is home to both theNational Down Syndrome Projectand a National Fragile X SyndromeResearch Center (with BaylorCollege of Medicine), constitutingthe largest research program onthis disorder in the nation. Thisyear the DOHG has received aNational Institutes of Health grantto support Genetic Autismresearch.

The Emory GeneticsLaboratory (EGL) provides testing and managementguidelines for the Newborn Screening Program of Georgia.Approximately three percent of all living newborns have abirth defect or health problem. These conditions may beevident shortly after birth or later in the child’s life. EGLprovides diagnostics for hundreds of genetic diseases,receiving over 28,000 patient specimens per year from allover the country and is the major national referral center forseveral genetic disorders.

Children who are not reaching developmentalmilestones or have characteristics of a genetic conditionmay be referred to one of Emory’s Genetics Clinics. Specialtyclinics are held for patients with inherited metabolic

disorders, Downsyndrome, Fragile Xsyndrome, neurofi-bromatosis, lysosomalstorage diseases, andcraniofacial disorders. Our medical staff includes Board CertifiedPediatricians PaulFernhoff, M.D., Medical Director, Margaret Adam, M.D.,Daniel Gruskin, M.D., and Jeannie Visootsak, M.D., who isalso Board Certified in Developmental-Behavioral Pediatrics.

The Department holds numerous weekly clinics forchildren and adults and is responsible for all in-patientconsultations and management of genetic diseases in sixmetro Atlanta hospitals. In addition, several outreach clinicsare held throughout the state. A number of clinical researchprotocols are conducted by the Department, includingenzyme replacement trials for Fabry’s and Gaucher’s diseasescarried out by the Center for Lysosomal Disease.

Our clinical genetics team also evaluates adults at riskto inherit an adult-onset genetic condition or those seekingtreatment for a pre-diagnosed genetic disorder. A strongfamily history of cancer, heart disease, diabetes or otherpotentially inherited conditions may warrant an evaluationwith a geneticist physician or counselor.

The Emory Metabolic Clinic and Nutrition Program,administered by Rani H. Singh, Ph.D./R.D., is a nationallyleading program, offering complete services to managemetabolic disorders. The program also includes an annualweeklong metabolic camp for young women withphenylketonuria (PKU) and maple syrup urine disease(MSUD); www.metcamp.org.

Our unique combination of a cutting-edge researchprogram in conjunction with a comprehensive clinicalgenetics division is revolutionizing patient care.

To learn more about the DOHG at Emory University,please visit us online at www.genetics.emory.edu. l

“Approximatelythree percent of allliving newbornshave a birth defector health problem.”

The Department ofHuman Genetics atEmory University holdsspecialty clinics forpatients with inheritedmetabolic disorders,Down syndrome, FragileX syndrome, neurofibro-matosis, lysosomalstorage diseases andcraniofacial disorders.

SPONSORSHIPS

Thanks to OUR SPONSORSfor their Support.


5HQWDO$FFHVV1HWZRUN

$IIRUGDEOH5HQWDO

+RXVLQJ IRU*HRUJLDQV

Albany ARC, serving our community

since 1963, promotes the general welfare of people withdisabilities and fosters

the development of programs on their behalf.

(229) 888-6852(24-hour on-call)

www.albanyarc.org

Albany AdvocacyResource Center

If you are interested in being asponsor for Making a Difference

magazine, please call Christina Carlton @ 770-578-9765 770-394-9791 • www.childrens-services.com

“Complete developmentaloccupational therapy

for children –toddlers through teens.”

www.gcdd.org 31

RESOURCES

pg. 29 pg.16 pg. 20pg. 10

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

Governor’s Council on Deve-lopmental 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/

GA House of Representativeswww.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

GA Lieutenant Governor’s Officewww.ltgov.georgia.gov/02/ltgov/home/0,2214,2199618,00.html404-656-5030

Dept. of Community Healthhttp://www.dch.state.ga.us/404-656-4507

Dept. of Human Resourceshttp://dhr.georgia.gov404-656-4937

OlmsteadState of GA’s OlmsteadImplementation Planhttp://dhr.georgia.govType “Olmstead Plan” into the“Search” box and press enter.

The Olmstead Decision Overviewwww.accessiblesociety.org/topics/ada/olmsteadoverview.htm

The Supreme Court’sOlmstead Decisionhttp://www.findlaw.com/casecode/supreme.htmlType “Olmstead” into the “Party Name Search” box and press enter.Select “Olmstead v. L.C.”

Atlanta Legal Aidwww.atlantalegalaid.org404-524-5811

Children’s Freedom InitiativeGA House Resolution 633www.legis.state.ga.us/legis/2005_06/pdf/hr633.pdf

Children’s Freedom InitiativeSummit and GeorgiaAdvocacy Office (GAO)www.thegao.org404-885-1234800-537-2329

Institute on Human Develop-ment and Disability (IHDD)www.ihdd.uga.edu706-542-3457

Statewide IndependentLiving Council of GA (SILC)www.silcga.org770-270-6860, 888-288-9780TTY: 770-270-5671

People First of Atlantawww.disabilitylink.org/docs/people.html

Alliance for Full Participation (ALP)www.allianceforfullparticipation.org301-706-6252

InclusiveRecreationAtlanta Lawn TennisAssociation (ALTA)www.altatennis.org

Boy Scouts of Americawww.scouting.org

Boys & Girls Clubswww.bgca.org

Georgia Dance Conservatorywww.ruthmitchelldance.com770-426-0007

GA State Soccer Associationwww.gasoccer.org770-452-0505

Girl Scouts of the USAwww.girlscouts.org

Parent To Parent of Georgiawww.parenttoparentofga.org800-229-2038

YMCAwww.ymca.net

Zoo Atlantawww.zooatlanta.org/family_fun_summer_safari_camp.htm

Johnny gets tired of waiting to leave the institution . . .

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

Address Service Requested

GEORGIA GOVERNOR’S COUNCIL ON DEVELOPMENTAL DISABILITIES

Real Homes. Real Jobs. Real Education. Real Influence.

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

Volume 6, Issue 1 • Summer 2005

Advocates took part inthe Long Road HomeMarch II, June 19-22,ending with a rally atthe Capitol to celebratethe sixth anniversary ofthe landmark Supreme CourtOlmstead Decision, a turningpoint for people with disabilitiesthat opened the door to a life offreedom in the community.

Long Road Home March II

Atlanta photos by Harris Hatcher. Athens photos by Bob Herrin.

making a difference magazine || summer 2005

Documents

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thosewith disabilities

people withdisabilities

real education

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w hen people

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