Making a Difference Magazine || Winter 2006

GEORGIA GOVERNOR’S COUNCIL ON DEVELOPMENTAL DISABILITIES

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

WINTER 2006

www.gcdd.orgwww.gcdd.org

Features11Advocacy: The ImpetusBehind Positive ChangeGCDD Unveils 2006 Public Policy AgendaGCDD’s revised agenda-settingprocess will engage a broaderconstituency of organizations and individuals involved withdisability advocacy.

14Governor’s Office Worksto Modernize MedicaidGeorgia proposes to ease risingMedicaid costs with new healthcare delivery approaches focusingon preventive care.

18Leaving CentralState: HundredsMay SeekCommunity LivingDHR has proposedtransitioning over 300Georgians withdevelopmental disabilitiesfrom Central State Hospital intothe community – a measure theysay will improve quality of life.

24Executives DiscoverPeople with DisabilitiesCan and Want to WorkAtlanta’s executives witnessedpeople with disabilities working atreal jobs and were challenged tofind opportunities in their own

corporations forthe disability jobmarket.

4GCDD ViewpointThe Power of AdvocacyThe power of advocacy isactualized through directaction.

5From the GCDD ChairNew Year Brings NewAdvocacy Opportunities.GCDD Chair urgescommunity to becomepolitically active.

6Around GCDDGCDD Hosts Seventh “BetterAll Together” Conferenceand Disability Day.

9News and EventsLivable Lifetime ShowHouse showcases universaldesign; Olmstead plaintiffdisplays art; Updatedversion of the AutismSpectrum Resource Guidenow available; Magazinebroadcast on radio.

10Straight TalkNatalie Tumlin advocatedfor those who couldn’t.

22PerspectivesA new and veteran advocateshare their thoughts onadvocacy.

28Legal UpdateDiscover how to assist indi-viduals without removingfundamental rights.

DepartmentsIn Each Issue3 Letter from

Governor Sonny Perdue

27 CalendarEditorial Cartoon

29 Resources

2 Making a Difference • Winter 2006

TABLE OF CONTENTS

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www.gcdd.org 3

FROM THE GOVERNOR

Volume 6, Issue 3 Winter 2006

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.

Tom SeegmuellerChairperson

[email protected]

Eric E. JacobsonExecutive Director

[email protected]

2 Peachtree Street NW, Suite 26-246Atlanta, 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

Brandon D HuntCartoonist

To Georgia’s Disability Community,

M y vision for Medicaid in Georgia is health care that promoteshealthy lifestyles. For individuals who have a chronic orpersistent illness, this means services that teach and assistindividuals on Medicaid to manage their own

health care conditions. For individuals who are at risk fordeveloping chronic or persistent illnesses, our Medicaid systemshould be structured to teach personal responsibility forlifestyle changes that are preventive, avoiding the needlesssuffering that conditions like diabetes, heart disease andobesity cause. For our children, prevention is the key. We mustidentify health concerns early, and begin teaching the child andtheir parents how to make wise choices about health care.

With these goals in mind, we need a new approach forproviding health care; we need to bring the doctor/patientrelationship back to the front and center of decision-making.This relationship should provide our Medicaid-eligible citizensthe health care services they need, no more and no less. Weneed health care decisions to be made based upon whatresearch shows is effective treatment, in the most cost efficient manner. Whengiven information on the effectiveness of treatments and the costs of treatment,I am confident individuals on Medicaid can make the right choices for theirhealth care needs.

I have heard from groups opposing changes to Medicaid, claiming the stateis limiting federal funding, looking at cutting needed services and reducingeligibility. They even claim that our citizens on Medicaid cannot make their ownhealth care decisions. None of this is true.

The truth is our Medicaid transformation effort is about improving health forGeorgians on Medicaid while we also control unsustainable health care costs inways that make sense. We know that health is improved by using preventionservices, improving health literacy, making treatment available at the right timeand in the right places and, when needed, assisting individuals to manage theirhealth care. These are the same ideas we have heard from many of you who havejoined us in this transformation work.

My hope is we will continue to work together to improve Medicaid becauseGeorgians on Medicaid deserve to be involved in a health care system that willallow them to make decisions that will truly improve their health and quality of life.

Sonny PerdueGovernor

A s we begin a new year and another legislativesession, it is time to reflect on the past andprepare for the future. While we have had somesuccesses during the past year, there is no time

to simply declare victory and relax. We do not have thatluxury. There is much work still to be done.

We must begin thinking about how we as the disabilitycommunity are organized to create the social and policychanges that we desire. We need to begin thinking about

not only how we advocate, but how weorganize and create coalitions that includeothers with common interests. I recentlyattended a training session where I learnedthe principles of “direct action.” Direct actionis about challenging the existing powerrelationships by changing what is happeningand how people act together. It is aboutpeople with developmental disabilities andtheir families coming together to developsolutions to problems that meet their needs.They can do this by joining with others andusing their numbers to pressure the system tochange.

We can work together and with others towin real and immediate changes that improve

people’s lives. During the legislative session, we willcontinue to work to Unlock the Waiting Lists! and supportefforts to fund 1,500 new waivers for the Mental RetardationWaiver Program and 152 new waivers for the IndependentCare Waiver Program. We can close buildings at Central State

Hospital and movepeople into thecommunity withMoney Follows thePerson legislation. Wecan make sure thatthe over 150 childrencurrently living in

public and private institutions come home to loving andstable families. These are changes that we can make happenduring this legislative session.

We can work together so that all those involved have asense of their power. There are many opportunities for you,your family and your friends to come to the Capitol and letyour legislators and elected officials know what is importantto you. You can join People First of Georgia in supportinglegislation that will allow money to follow the person forthose leaving institutions or Unlock the Waiting Lists! tosupport increased funding for services and supports. You can

join with direct support professionals in trying to get betterwages and benefits. You can come to the Capitol onDisability Day (February 23, 2006) and be a part of the morethan 1,300 individuals who will let their voices be heard.

We can alter the relations of power by making sureindividuals, and when appropriate, their families, havecontrol over their lives. The new waivers currently beingwritten by the Division of Mental Health, DevelopmentalDisabilities and Addictive Diseases will put individuals andfamilies more in control over the supports purchased andwho provides those supports. New options such as aMedicaid Buy In will allow people to work and continueusing Medicaid as the payer for health care and supports.And, we can support legislation that will ensure that allplaces where people vote are physically accessible so thateveryone can participate in our civic responsibility to voteduring upcoming elections.

Nelson Mandela once wrote, “Our deepest fear is notthat we’re inadequate, but that we are powerful.” We cancome together and show that as a community we are indeedpowerful. Make sure that you are among those in attendanceat Disability Day at the Capitol AND also make sure thatyour legislators are in attendance and know about ourissues. Call them today and tell them you expect to seethem on February 23. Make an appointment to see themthat morning and ask them to support the budget andlegislative issues you will read about in this edition ofMaking a Difference. Finally, ask them to sit with you atlunch at the Freight Depot. You can help us win immediateimprovements in your life, experience the sense of powerwhen we all come together, and alter the relationships thatwill result in the system recognizing this is about YOUR life.

Finally, we encourage you to write thoughtful responsesto specific articles published in Making a Differencemagazine. Please allow us the opportunity to print youropinions by e-mailing “Letters To The Editor” [email protected].

I look forward to seeing each of you at Disability Dayat the Capitol, February 23. Your calls and e-mails arealways welcome. You can reach me at 1-888-275-4233 oryou can e-mail me at [email protected]

GCDD VIEWPOINT


The Power of Advocacy

Eric E. JacobsonExecutive Director, GCDD

“We need to begin thinkingabout not only how we advocate,but how we organize and createcoalitions that include otherswith common interests.”

FROM THE GCDD CHAIRPERSON

www.gcdd.org 5

F or many, the New Year brings thoughtsof stereotypical resolutions andrenewed commitment. For those of usliving in the World of Disabilities, the

New Year brings thoughts of political activism inthe coming legislative session. For some, thepolitical process and the thought of becominginvolved are either unpleasant or intimidating.Others have little or no faith that their actionswill make any difference.

However, to quote former Atlanta MayorMaynard Jackson, “Politics is not perfect, but it’sthe best available nonviolent means of changinghow we live.” Therefore, for those of us seekingchange, it is once again time to roll up oursleeves and become politically active.

In this issue of Making a Difference you will find GCDD’s legislative agenda forthe coming session. We realize that this agenda does not address all the concernsthat individuals across the state may have. However, our prioritization of theseissues is directly related to not only their significance, but also the potential forpositive change.

If you have never been a part of Disability Day at the Capitol, I urge you tocome to Atlanta on February 23, 2006 and join disability advocates from all acrossGeorgia for a powerfully unifying experience. Please look for the Disability Day at

the Capitol registrationform on page 7, fill it out and mail or fax it toour office. For moredetails on this, call GCDDor visit our Web site at

www.gcdd.org. The site is also an excellent way to stay abreast of the progressrelating to our agenda during the official proceedings of the general assembly. Ourlegislative fact sheet, Moving Forward, is updated weekly and available online tokeep you informed.

You CAN make a difference. Personal advocacy has had a direct impact ondramatic changes relating to waivers, the waiting lists and other issues duringrecent legislative sessions. I believe that it is worth reiterating that if those of us inthe disability community all spoke up in unity, we would be one of the largestMAJORITIES in the political system today. Your involvement in this process can trulymake a difference. Help us. Help yourself. Help those you love.

New Year Brings New Advocacy Opportunities

“... for those of us seeking change, it isonce again time to roll up our sleevesand become politically active.”

Letters to the EditorLetters should include the writer’s full name, address, phone number, and may be edited for purpose ofclarity and space.

Contact Our Editor:Valerie Meadows Suber,[email protected], 404-657-2122, Fax 404-657-2132

or: 2 Peachtree Street, NW, Suite 26-246, Atlanta, GA 30303-3142

Audio or Large Print Versions:For an audio version of Making aDifference, please contact GCDD. Alarge font version is available fordownload at www.gcdd.org.

Sponsorship:For sponsorship opportunities contact:Christina Rosell at 770-578-9765 [email protected]

Subscriptions/Back Issues:Visit 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, theeditors or state government.

HOW TO REACH US

Tom SeegmuellerChairperson, GCDD


AROUND GCDD

Wednesday, March 1, 20069 am - 12 pm .................... Direct Support

........................Professional Meeting

11:30 am - 5 pm .. Conference Registration

1 - 2:30 pm.................. Welcome/OpeningKeynote: Robin Ervin and Tom Glennon

2:30 - 3 pm .................................. Break

3 - 5 pm ...................... Breakout sessions

5 - 7 pm .................. Dinner on Your Own

7 - 8:30 pm ................ Evening Keynote:....Solomon, Simmons, Everett, O’Prey

8:30 pm........................................ Social

Thursday, March 2, 20067 - 8:30 am ............ Continental Breakfast

8 am - 5 pm ........ Conference Registration

8:30 - 10 am ...... Keynote: Dr. Pat Cooper

10 - 10:30 am................................ Break

10:30 am - 12 pm ........ Breakout Sessions

12 - 1:30 pm.................... Lunch Provided

1:30 - 3 pm.................. Breakout Sessions

3 - 3:30 pm .................................. Break


Friday, March 3, 20067- 8:30 am .............. Continental Breakfast

8 am - 5 pm ........ Conference Registration

8:30 - 10 am ......Keynote: Dr. Stephen Hall

10 - 10:30 am................................ Break




3 - 3:30 pm .................................. Break


5 - 7 pm .................. Dinner on Your Own

7 pm ............................................ Social

Saturday, March 4, 20067 - 8:30 am ............ Continental Breakfast

8 - 8:30 am ........ Conference Registration

8:30 - 10 am ................ Breakout Sessions

10 - 10:30 am .............................. Break



1:30 - 3 pm ... Closing Keynote: Tom Kohler

GCDD Hosts Seventh “Better All Together” Conference

Since 1994, the Georgia Governor’s Council on Developmental Disabilities has joinedwith students, parents and educators to learn how to successfully support students andschool personnel so students could be successful, contributing members of local schools byhosting the Better All Together conferences.

Better All Together #7: Inclusion Works! on March 1-4, 2006, celebrates the past sixconferences and continues to include topics about educational inclusion as well as inclusionand contribution in community life after graduation from school. The conference offerssessions that will help participants learn how to include young people with disabilitiesduring their school years and provides sessions that demonstrate what is possible for youngchildren before school age and for adults as they graduate from high school.

Many experts from Georgia and around the U.S. and Canada will present a wide varietyof sessions on:

• Early childhood inclusion • School inclusion• Curriculum modifications • Supported living• Supported employment • Community building• Teaching strategies • Assets-based community development • Person-centered planningEach day will include sessions on both education and adult issues from recognized

experts, including Dr. Stephen Hall, director of Georgia’s Office of Developmental Disabilitiesof the Department of Human Resources, Division of Mental Health, DevelopmentalDisabilities and Addictive Diseases. Cary Griffin, an expert in customized employment; Kathy Everett, a parent of a child with a disability and a special education teacher; andself-advocate Gail Bottoms are just three of the speakers who will reveal their strategies forsuccess during the conference. In addition, students, adults with disabilities and parents ofchildren with disabilities will share their experiences and lessons from school, work andcommunity life.

The conference will be held at the University of Georgia Center for ContinuingEducation in Athens. For more information, or to register, call 706-542-2134 or 800-884-1381 or visit www.gcdd.org.

Co-Sponsors• The Arc of Satilla• The Arc of Walker County• Bright from the Start: Georgia

Department of Early Care and Learning• Brain and Spinal Injury

Trust Fund Commission• CDAG: Community Developers

Association of Georgia• Department of Human Resources - Office of Developmental Disabilities• GAO: Georgia Advocacy Office• Georgia Department of Education - Division for Exceptional Students• IHDD: Institute on Human Development and Disability

CONFERENCESCHEDULE

www.gcdd.org 7

Disability Day at the CapitolYour Vote Makes a Difference!February 23, 2006Join the Governor’s Council on DevelopmentalDisabilities at the Georgia Capitol for:

• Advocacy training from representatives ofPartners in Policymaking and the Unlock the Waiting Lists! campaign

• A rally to let legislators know how theirdecisions affect people with disabilities

• Updates from local grassroots leaders

• Opportunity to eat lunch with legislators from across the state

For more information, visit www.gcdd.org or call 404-657-2126.

DISABILITY DAY

ATTENDEE RSVP FORM Disability Day at the Capitol February 23, 2006

Please register to attend the luncheon.

RSVP: 404-657-2126, Toll Free 888-ASK-GCDD, FAX 404-657-2132, TTY 404-657-2133, or www.gcdd.org

Name: ________________________________________ Organization: __________________________ Total # attending: ________

Mailing Address: ________________________________________________ City: ________________________ Zip Code: ________

E-mail: ____________________________________________________________ Telephone:__________________________________

Optional $10.00 donation per person to support luncheon is appreciated, but not required. Total payment amount: ____________ Total amount enclosed: _______________

Please make check payable and return to:Governor’s Council on Developmental DisabilitiesDisability Day Registration2 Peachtree St. NW, Suite 26-246, Atlanta, GA 30303.

Please note special accommodations we should be aware of: __________________________________________________________

________________________________________________________________________________________________________________

________________________________________________________________________________________________________________

________________________________________________________________________________________________________________

Make YOUR voiceheard – attendDisability Day at the Capitol

February 23, 2006!

Make YOUR voiceheard – attendDisability Day at the Capitol

February 23, 2006!

Disability Day at the CapitolYour Vote Makes a Difference!February 23, 2006


SPONSORSHIP FORM Disability Day at the Capitol February 23, 2006

GCDD hosts Disability Day at the Capitol each year to link people withdisabilities with their local legislators. Your support helps people withdisabilities tell their stories to policymakers and move Georgia toward abetter quality of life for all citizens.

m Yes! My organization will co-sponsor Disability Day at the Capitol (check desired sponsorship level):

m $10,000: Full-page advertisement in Making a Differencemagazine, name on banner and program, reserved VIP seating,exhibit space.

m $5,000: Half-page advertisement in Making a Difference magazine, name on banner and program, exhibit space.

m $2,500: Quarter page advertisement in Making a Differencemagazine, name on banner and program, exhibit space.

m $1,500: Name on banner and program exhibit space.

m $500: Name on banner and program.

m $150: Name on program.

m Yes! I will attend Disability Day at the Capitol.

m Yes! Other representatives from my organization will attend Disability Day at the Capitol. I am attaching a list of the names of the people who will be attending.

m Check enclosed m Please invoice

Name: ________________________________________________________ Title: __________________________________________

Organization name exactly as you wish for it to appear on event materials: __________________________________________________

______________________________________________________________________________________________________________

Address: ________________________________________________________________________________________________________

City: ______________________________________________________ State: ______________________ Zip: ________________

E-mail: ____________________________________________________ Telephone: ________________________________________

RETURN TO:Governor’s Council on Developmental Disabilities • Attention: Disability Day

2 Peachtree Street NW, Suite 26-246 • Atlanta, GA 30303Or fax to 404-657-2132

DISABILITY DAY

NEWS & EVENTS

The 2006 Livable Lifetime Show House,which showcases universal design features,will be open for tours every day but SundayMarch 11 - April 1 in Fayetteville, Ga., inthe Emory Springs Community on Hwy 54.Presented by the Universal Design Alliance,the home will highlight many designelements that produce a convenient, safeand flexible home that can meet thechanging needs of individuals and familiesthroughout their lifetimes.

The Universal Design Alliance is anonprofit organization dedicated toeducating the public on the benefits ofboth interior and exterior home featuresthat promote lifetime enjoyment. It hasteamed with Bob Adams Homes to createthis show home that includes manyexamples of accessible features for peopleof any age or ability.

The Show House will demonstrate thetalented skills of interior designers trainedin “multiple life stage design” and willinclude many ideas not commonly availablein homes at this time. In addition,workshops, seminars and special events areplanned to help educate consumers on thebenefits of a livable, lifetime home.

The Show House will benefit theEasyLiving HomeCM Coalition and theUniversal Design Alliance. Tickets are $5,groups of 20 or more are $4 each.

www.universaldesign.org

Olmstead PlaintiffShows Art

Lois Curtis, who took her fight to livein her community all the way to the U.S.Supreme Court, recently showed her artworkin her first exhibit called, Ms. Curtis, it’s apleasure to meet you.

The exhibit, held November 11 -December 23 at the Temple Gallery inDeKalb County, celebrated Curtis’ journeyfrom institutionalized isolation tocommunity inclusion.

Curtis spent most of her adolescent andadult life as a resident in various state-runinstitutions for people with disabilities.After her repeated requests to reside in thecommunity were denied, Curtis’ 1999 suitagainst the State of Georgia came beforethe Supreme Court. Victorious, the

landmark Olmstead Decision became the national mandate to free tens of thousandsof people with disabilities fromunnecessary and unjust institutionalization.

Today, Curtis receives community-basedsupport and makes art and advocacy herlife’s work. With pastels and acrylics, Curtis’expressions are bold and emotionallystraightforward. Her remarkable insight intopeople and her joy for life are powerfulreminders that everyone has dreams andcontributions to make.

The Temple Gallery, sponsored by theDeKalb Council for the Arts, is a nonprofitgallery committed to bringing innovativeart and artists to the community.

New Autism Guide Available

The Governor’s Council onDevelopmental Disabilities, in partnership

with the Autism Society of America’s (ASA)Greater Georgia Chapter, has developed anupdated version of the Autism SpectrumResource Guide. The guide includes:

• Where to Find Resources in Spanish

• Where to Find Information on GettingA Diagnosis and/or Evaluation

• Where to Find Information onProfessionals, Therapy and Treatments

• What to Expect After You Get a Diagnosis

• Where to Find Information onProviders, Respite and Other Resources

• Where to Find Information on FinancialAssistance Sources

• Where to Find Information on Future Planning

• Where to Find Information onSupported Living and ResidentialFacilities

The new resource guide is available fordownload from www.gcdd.org. Alternativeformats are available upon request.

Magazine NowBroadcast

The Governor’s Council onDevelopmental Disabilities is proud toannounce Making a Difference magazine is now read and broadcast on the radiobandwidth of the Georgia Radio ReadingService (GARRS) weekly, every Thursday at 8:30 AM and on Saturdays at 10:00 AMand 10:30 AM. Listen online atwww.garrs.net or call 404-685-2820 for information on how print-challengedindividuals can receive a program guide and a special radio receiver free or for anominal donation. The Georgia RadioReading Service covers the entire state of Georgia and has approximately 20,000listeners. l

Livable LifetimeShow HouseOpens in March

www.gcdd.org 9

Curtis’ art was on display at the Temple Gallery.

StraightTalk

Natalie Tumlin:Advocated for Those Who Couldn’t

E ven before she was liberated by assistive technology and could only make about 30sounds, Natalie Tumlin was a self-advocate, according to her mom, Beth Tumlin.“When she was about seven or eight, her school wanted to put her in a classroom

with children with profound disabilities. It was a quiet, isolated situation, and she said,‘No, no, no, no, no.’ It was her first self-advocacy – she let us know she didn’t want to beisolated – she wanted to be with others,” Tumlin said.

Natalie Tumlin, 30, died October 1, but not before touching the lives of people allover the country, and lending her voice to help other Georgians with disabilities.

When Tumlin was 12, her world was changed by assistive technology (AT). “Her firstTouch Talker opened the world up for Natalie, and Natalie up to the world,” her mom said.

Because Natalie Tumlin had such a narrow repertoire ofsounds she could make, people assumed she didn’tunderstand what they were saying to her. But once shebegan using AT and started communicating with others,people realized she did understand.

While still in high school, Natalie Tumlin’s self-advocacy expanded to include advocating for others. Shebegan attending meetings at the Cobb County CommunityServices Board about the lack of services for people withdisabilities with her mother. “Natalie was at most of themeetings, adding in her two cents. That was important – itwasn’t just a group of parents, it was also a person with a

disability describing what she wanted,” Tumlin said.In 1997, the Tumlins became aware of the problem of waiting lists for services and a

year later they started the Unlock the Waiting Lists! campaign. Natalie Tumlin became aspokesperson for that effort by visiting legislators and telling them what she needed.

“All Natalie’s legislators knew her,” Tumlin said. “Natalie made the campaign real. Shetalked to people who lived in nursing homes and knew she didn’t want to live in one.”

As a result of her advocacy efforts, Natalie Tumlin received a Community Habilitationand Support Services (CHSS) waiver that allowed her to live in her own home in 1999. Shealso received a supported employment grant.

“She was able to get a job coach. She took the CCT (Cobb Community Transit) bus tothe interview. She started working for Windy Hill Hospital as a courier and earned apaycheck. She had a lot of independence,” her mother remembered.

“She couldn’t walk, talk, dress or feed herself, but she had two paying jobs andstarted her own company,” Tumlin said.

The waiver support allowed Natalie Tumlin to enjoy life in her community. “She loveddoing what people took for granted. She loved going shopping, to the pharmacy and lovedgoing to the dentist!” her mother exclaimed.

After receiving her waiver, Natalie Tumlin’s advocacy didn’t end. She continued to givea voice to those who couldn’t speak for themselves by participating in rallies, meetingwith legislators and completing the Georgia Voices that Count class.

“Communicating was Natalie’s greatest achievement. It was something she couldn’t dofor such a long time. Being able to talk for others put the biggest grin on her face,”Tumlin said. l

It is so hard to bid you farewell. You havetouched so many lives and had so manystories to tell.

I think we first met at Wheeler High whenyou were a student there. A personcentered plan we developed.. .what futuremight you dare?

You made it very clear what you had onyour mind. It didn’t take lots of words toknow the life you wanted to find.

You used your Liberator to make sure thateveryone knew. It really did give youfreedom so your self-determination grew.

The ICWP came along after quite a wait.You moved into your own place and found a nice housemate.

Gina was the best at making sure yourneeds were met. She paid attention to the little details. . .on that you couldalways bet.

You found every opportunity to let thepoliticians know. That we needed morecommunity services. . .so let the moneyflow.

Three governors of this state all knew youby name. Miller, Barnes and Perdue.. .onyou they had no more fame.

I always loved how your mom would beintroduced to others. It wasn’t Beth.. .or Mrs. Tumlin. . .It was always Natalie’smother.

You were one of the most loved people Ihave ever seen. I know you never doubtedit a moment. . . that must have felt serene.

The laughter, the joy, the good times thatwe all shared. Will make wonderfulmemories. . .no better ones will compare.

Too many of our self-advocate friends haveleft us this year. We will miss you alongwith Elaine, Teresa and Leonard’s rallycheer.

I am sure without a doubt that heaven is abetter place. Because you are there nowwith your amazing grace.

Thank you, Natalie, for being you andsharing your life with us all!!!

Dottie Adams, Family and Individual Support DirectorGovernor’s Council on Developmental Disabilities

AN ODE TO NATALIE


By Valerie Smith Buxton Natalie Tumlin:Advocated for Those Who Couldn’t

www.gcdd.org 11

The Governor’s Council onDevelopmental Disabilities(GCDD) revised its agenda-setting process for the 2006

session to engage a broader constituencyof organizations and individualsinvolved with disability advocacy.

In September, letters were sent to 35 agencies andorganizations representing a variety of disability-related activities, inviting them to submit the budgetor legislative issues on which they would be focusedduring the legislative session. The issue had to havesome impact on the community of people withdevelopmental disabilities; be in concert with GCDDmission, vision and values; capitalize on the expertiseof GCDD; and be an issue for which GCDD could use itslimited resources constructively. GCDD received inputfrom nearly a dozen organizations, and also soughtinformation from a few state agencies. These itemswere summarized and explained to council members atthe October meeting, and through a point system, wereseparated into five tiers of action: initiate; activesupport; support by name; remain neutral; and oppose.

The following discussion presents the items onGCDD’s legislative agenda to date. Keep in mind theactivities of the legislative session are a moving target,

and GCDD’s attention to particular issues is subject tochange. For that reason, an ad hoc Public PolicyCommittee was established of seven council memberswho will meet by phone to review the events of eachweek, make adjustments to the agenda and advise thedeputy director. GCDD will be supported at the Capitolby several individuals who are working on particularbudget items or legislation.

Tier I: Initiate GCDD Is Lead Agency

• Amendments to the Election Code: This piece oflegislation is carried over from last year. GCDD isawaiting a new draft from the vice chair of theHouse Governmental Affairs Committee. Thelegislation would make corrective changes to thefollowing aspects of the code: definition of disabilityand attendant care; oath requirement; alternativemeans of voting; mental competence; requirementsfor accessible materials; assistance at the polls; anddelivery of absenteeballots. The leadattorney at theGeorgia AdvocacyOffice, Josh Norris,will be assistingGCDD with thispiece of legislation.

• Money FollowsPeople Legislation:GCDD will assistPeople First ofGeorgia with thisinitiative. Severalstates and thefederal governmenthave some versionof Money Follows thePerson legislationeither in effect or pending. Georgia will be workingon a draft that will authorize the transfer of fundsthat support individuals in institutional settings fromthe institution to their communities.

Tier II: Actively SupportGCDD will testify, help individuals testify, produce anddisseminate information and talk with legislators aboutthe legislation or budget issue.

• HB 898: E-Text Legislation: Requires publishers toprovide accessible education information (anelectronic version) to postsecondary students with aprint access disability. The e-version must have

Advocacy: The Impetus BehindPositive ChangeGCDD Unveils 2006

Public Policy Agenda

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

Self-advocates march from the Capitol to the Freight Depot to callattention to the waiting lists.

“Keep in mind the activities of the legislative session are amoving target, and GCDD’sattention to particular issues isalways subject to change.”

Advocacy: The Impetus BehindPositive Change


structural integrity. A coalition of the StatewideIndependent Living Council (SILC), Association onHigher Education and Disability (AHEAD), LearningDisability Association of Georgia, Tools for Life andthe National Federation of the Blind is supportingthis legislation, which is assigned to the HouseCommittee on Higher Education.

• Medication Administration Certification Program:Department of Human Resources (DHR) has receivedsupport from Governor Sonny Perdue’s office toproceed with legislation authorizing staff atCommunity Living Arrangements to administercertain medications and procedures to individualswith disabilities under the oversight, but not directsupervision, of a registered nurse. Staff mustcomplete the Meds certification course, and theauthorization will affect only homes in metro Atlantaat this point.

There are numerous budget items in the DHRbudget that GCDD will actively support with the Unlockthe Waiting Lists! coalition, under the leadership ofDave Blanchard, of the Atlanta Alliance for Develop-mental Disabilities. Most items are included in theMental Health, Developmental Disabilities, AddictiveDiseases portion of the DHR budget.

• 1,500 Mental Retardation Waiver Program (MRWP)waiver slots

• Transition 135 consumers with developmentaldisabilities from Central State Hospital Allen Building

• Transition 19 juveniles with dual diagnosis from NWGeorgia Regional Hospital

• Transition 38 consumers from the Freeman Buildingat Central State Hospital

• Close West Central Georgia Regional Hospital in

Columbus; serve consumers in appropriate settings

• Close Craig Nursing Home at Central State Hospital;serve 149 consumers in appropriate settings

• Support additional funding so providers can payDirect Support Professionals fair and adequate wages,provide training and assure quality services (ServiceProviders Association for Developmental Disabilities -SPADD)

• Department of Community Health (DCH) budget:Medicaid – Fund a basic prevention and minorrestorative treatment dental care program forpregnant women and adults with developmentaldisabilities. (Georgia Dental Association, GDA)

Tier III: GCDD allows use of name in support, but otherwise no activity. Organization supporting the item is listed.

• HB 369 and SB 159: Helmet Laws (with the Brainand Spinal Cord Injury Trust Fund - BSCITF)

• Grandchildren’s Caregiver Subsidy Act (Georgia Council on Aging - GCOA)

• Cause of Death Reporting Requirements (GCOA)

• Common Sense Initiatives for Safer Health Care(GCOA)

• Cruelty to Elder Person Act (GCOA)

• HB 142: Create a duty to provide child support forchildren with disabilities beyond age of majority

• SB 208: Modification of language for statute forCentral Registry for BSCITF

ADVOCACY OPPORTUNITIES

Stay abreast of thehappenings at the session in several ways:• Find out who your legislators are.

Go to www.vote-smart.org and enteryour 9-digit zip code.

• Check the status of current bills,resolutions and the committees your legislator serves on atwww.legis.state.ga.us.

• Make sure you are on the mailing listfor Moving Forward, GCDD’s weeklylegislative update, that summarizes critical bills and the status of budgetdiscussions. Moving Forward is alsoposted to the GCDD Web site at the end of each week.

• Visit the GCDD Web site’s Public PolicyLink and download position papers and one-page fact sheets that you canshare with legislators on the issuesyou are concerned about. A constantly

updated legislative agenda will also be posted there.

• Attend Disability Day at the Capitol.This is a great way to invite yourlegislator to meet you for lunch at the Depot and hear your concerns.

• Visit your legislator at the Capitol.There are always advocates on the thirdfloor outside the double elevators whowill be happy to help you meet yourlegislator at the ropes.

www.gcdd.org 13

PUBLIC POLICY

Budget Items• Funds to continue expansion of Aging

and Disability Resource Centers (Division of Aging-DOA)

• DHR: Medicaid funding for 500 elderly consumerswho are nursing home eligible: $1.475 million (DOA)

• An additional $6,000,000 to provide services toindividuals on the Community Care Service Providerwaiver waiting list and $4,000,000 for 2,000individuals who qualify for non-Medicaid Home andCommunity-Based Services (GCOA)

• Additional funding to expand the Naturally OccurringRetirement Community (NORC) replicable model ofhome and community-based services to help seniorsage in place (Jewish Federation of Greater Atlanta-JFGA)

• Increase funds to provide critical respite support for caregivers (JFGA)

• Restore the Peachcare dental funding ($1.8 million)that was reduced in last year’s budget (GDA)

Tier IV: Council Remains Neutral• SB 78: Allow for exceptions of direct supervision of

dentists to enable dental hygienists to provideprophylactic dental care to individuals withdevelopmental disabilities in institutional settings

• Implementation of Administrative Services:Organization to oversee functions of Medicaid (TheRequests for Proposals for this function have notbeen developed yet, so it is unlikely this will be alegislative or budget issue this session)

• Suicide Prevention: Proposed legislation for theDivision of Public Health to create office of SuicideEducation and Prevention

Tier V: Council OpposesThere are no budget cuts or legislation that GCDDneeds to consider opposing action on at this time.

GCDD will track the development of several otherissues, and should the deputy director feel GCDD needsto respond by stating its position or taking action, thead hoc committee will meet to discuss the issue andadvise the deputy director on the course of action.Items under watch include:

• Paper ballot initiatives: Possible legislation torequire all electronic voting machines to have amechanism for recording a paper receipt that willenable the voter to verify their input (Concern iswhether the paper receipt will have accessibilitymodifications for people with disabilities)

• Use of Social Security numbers for voter registration

• Medicaid Modernization: watch for authorizinglegislation or a joint resolution allowing thegovernor’s office to proceed with the proposed 1115 waiver.

• Request of state funds in the Department ofCommunity Affairs budget to provide accessibilitymodifications to homes where a person with adisability lives

• Any legislation that would change thestructure of the MHDDAD regional system

• Additions to the DCH budget forIndependent Care Waiver Programwaiver slots. Currently the DCH budgetcontains no money for additional slotsfor the waivers, but advocates havebegun speaking to the Office ofPlanning and Budget and variouslegislators about meeting this need. Therequest is for 152 slots, which wouldrequire about $3.2 million in statefunds. If funds are included in thegovernor’s budget request, thedeputy director will request GCDD toconsider active support.

This agenda does not include thebills and budget issues that arise oncethe session begins in January. The sessionbegins Monday, January 9. GCDD expects thegovernor’s budget address the following week,and after that, GCDD will know how things stand withadvocacy efforts for the funds that support the Unlockthe Waiting Lists! and institutional transitions. l

Advocates have the opportunity to meet with their legislatorsduring Disability Day on February 23, 2006.


With higher medicalcosts and risingenrollment, Georgia’sMedicaid program is

predicted to consume more than 50percent of all new state revenue byfiscal year 2009.

The state is hoping to slow the growth in thecost of Medicaid by proposing a 1115 waiver to theCenters for Medicare and Medicaid Services (CMS)that will allow the state to try new approaches tohealth care delivery that are not included inMedicaid’s current regulations. In return, the statewill agree to stay within a specified budget.

“It’s not clear what the impact of MedicaidModernization will have on people with disabilitieswho rely on Medicaid for home and community-based services,” said Governor’s Council onDevelopmental Disabilities Executive Director EricJacobson.

Most of the changes appear to only affect peoplewho rely on Medicaid for their health care, not thosereceiving home and community-based services.

“The enhancements we’re suggesting focus onprevention, care and disease management,”

explained AbelOrtiz, GovernorSonny Perdue’spolicy adviser forhealth, humanservices, juvenile

justice and veteran’s affairs. “We’re proposingincentives to encourage regular health care throughthe medical home of the consumer’s choice.”

Ortiz hopes providing better preventive carewill help Georgia save money by reducing the morecostly trips to the emergency room or expensivetreatments for preventable conditions. Plus,choosing a medical home can reduce costs by bettercoordinating health care services for the consumerand avoiding duplicated efforts.

The plan includes paying providers enhancedrates to provide better services, such as after hoursand weekend hours or a nurse’s call line.

Cutting wasteful practices will also help curbcosts. “We won’t bundle services that don’t makesense. We don’t need to pay for services people don’tneed,” Ortiz said.

“We don’t want to restrict eligibility or reducethe expansion of services. We want to keep peoplehealthy,” he said.

Another proposal is to subsidize the cost ofemployer-provided insurance for those who don’tmake enough money to pay for the insurancethemselves.

Perhaps the biggest change being proposed isthe establishment of health opportunity accounts(HOA) for consumers. “If someone is at risk fordiabetes, and their primary physician advises themto go to a nutritionist, and they do that, money willbe deposited in their account. They can use themoney to pay for medical items or services theyneed that Medicaid won’t pay for, such as dentalcare, transportation to the doctor, daycare while aparent is at the doctor and other health-relatedexpenses,” Ortiz explained.

Money for the accounts would come fromsavings generated through the other changes, andcharitable contributions could pay into the accountsas well.

The plan, originally slated to be submitted to

“It’s not clear what the impact of MedicaidModernization will have on people withdisabilities who rely on Medicaid forhome and community-based services.”

Abel Ortiz, center, discusses disability issues with self-advocates.

Governor’s OfficeWorks to

Modernize Medicaid

By Valerie Smith Buxton

CMS January 31, 2006, may not be submitted assoon as intended, as stakeholders have proposedsome changes the governor’s office is considering.“We are re-looking at the date,” Ortiz said.

Advocates Reaction MixedWhile the plan was developed with input

from providers, consumer advocates and otherstakeholders, some advocates have concerns about the plan.

“My fear is that the plan could be used as atool to weed people off the rolls of Medicaid,”revealed Rebecca Ramage Tuttle, CEO of disABILITY

LINK, an independent living center in DeKalbCounty. She is concerned that people who don’tfollow their doctor’s prevention advice could bedropped from Medicaid.

Ortiz said that wouldn’t be the case. “Ifpatients fail to follow their doctor’s advice, there isno penalty, but the patient would not be able to getfunding added to their health opportunity account,”he explained.

In addition, Ramage Tuttle was disappointedthat other items were not included in the proposal.“I would have liked to see more home andcommunity-based services included,” she said.

Jacobson agreed. “There’s no data on howpeople with disabilities fit into the MedicaidModernization process. Are the MRWP changes(Office of Developmental Disabilities Director) SteveHall is proposing our part of the Medicaid reformeffort?” (see sidebar on page 17).

“This plan will force us to negotiatewith the federal government eachyear instead of receiving aguaranteed match rate.”

Georgia LegislatorRecommends FederalMedicaid Reform

Georgia Rep. Nathan Deal (R)presented Medicaid reformrecommendations to the U.S.House of Representatives thatwere passed in H.R. 4241 (DeficitReduction Act) November 18. As ofpress time, the House and Senatewere negotiating a final bill toreform Medicaid, but the Househad passed its final budget versionDecember 19.

Changes to the Medicaidprogram included in the House’sversion of the budget included theFamily Opportunity Act. The act, originally proposed in the Senate,allows low and middle-income families to access Medicaid for theirchildren with disabilities. Medicaid is often the only program thatprovides the benefits needed by children with significant disabilities.

Some of the House’s other recommendations included:

• STOPPING OVERPAYMENT FOR MEDICINE – Change Medicaid payment rates for medicines so they are based onthe average of actual sales prices for prescription drugs toavoid overpayment.

• CRACKING DOWN ON ASSET TRANSFERS – Restrictthe ability of elder law attorneys to qualify wealthy clientsfor Medicaid by transferring assets by beginning a penalty period on the date the individual seeks eligibility forMedicaid rather than at the time they transfer the asset.

• SHARING COSTS – Increase the co-pays for health servicesfrom $3 to $5 for some Medicaid recipients.

• PROVIDING FLEXIBILITY – Allow states to modifyMedicaid benefits so that they are equivalent to other healthprograms in the state with the largestenrollment.

The spring edition of Making a Differencemagazine will provide more information on what Medicaid reformCongress passes oncethe House andSenate reach aconsensus. l

www.gcdd.org 15

One part of the plan Ramage Tuttle liked wasthe health opportunity account idea. “The healthopportunity accounts would be a great help to payfor dental needs, assistive technology and otherdurable medical equipment that Medicaid doesn’tpay for,” she said.

An objection shared by Ramage Tuttle andconsumer health advocate Linda Lowe is thatapplying for a 1115 waiver has the potential tolimit federal funds.

“There is a danger in accepting limits onGeorgia’s access to federal funds. This plan willforce us to negotiate with the federal government

each year instead of receiving a guaranteed matchrate,” Lowe said.

Ramage Tuttle agreed, “The state needs to takeevery opportunity to increase federal funds, nottake the chance of decreasing them.”

Currently, for each 39 cents Georgia pays forMedicaid, the federal government pays 61 cents.“Under the waiver, the federal government requireswhat we do to be budget neutral. We’ll agree on aformula, trend it forward based on what we’ve beenspending. They don’t want to pay more than whatthey might have expected to pay without thewaiver,” Lowe said. “If the state goes over budget, we have to renegotiate with the federalgovernment, and we may or may not get the extramoney.”

Ortiz insists the plan will not have a negativeimpact on federal funds. “If the plan doesn’t remain

cost neutral over the total time of the waiver, wecould lose the benefit of the enhanced waiverservices, but federal funding is not at risk,” he said.

The governor’s office has released a list ofthe changes they are proposing that would

require the 1115 waiver, but Lowe feels many

Medicaid ModernizationChanges That Require 1115 Waiver

Governor Sonny Perdue’s office is recommending a number ofchanges to modernize Georgia’s Medicaid system. According to AbelOrtiz, the governor’s policy adviser for health, human services,juvenile justice and veteran’s affairs, implementing the followingchanges would require the state to apply for 1115, statewide waiverfrom the federal government:

• Exploring options for employer-sponsored insurance during eligibility phase.

• Allowing consumer to identify health care home, which mayinclude physicians, pharmacy, mental health providers and/ordentists.

• Providing prevention or educational services for consumers who are at risk for chronic or persistent conditions and communicablediseases.

• Including prevention and education under existing diseasemanagement services.

• Educating providers about community services and resourceopportunities and coordination.

• Giving medical home providers the ability to make a referral to a care management program that could include non-physicianswho would be compensated for their services, such as peersupporters.

• Health Opportunity Accounts:

n Zero beginning balance; funding is added when consumers make responsible health care decisions.

n Funding added based upon an individual amount, or capped amount for families.

n Funds may be used as payment for health-related services not otherwise covered under Medicaid (i.e. adult routine dental care, chiropractic care, orthodontists, transportation to doctor’s appointments, etc.).

n Payments to providers for services funded from the savings account need to be made by the Medicaid payment system.

• Providers Received Enhanced Rates For:

n Developing/participating in education, prevention and disease management.

n Participating in price transparency and quality outcomes measures.

n Taking part in peer to peer evaluation of practice patterns.

n Adopting the use of technology in their practice.

n Establishing a medical home. l


“We need to be clear that there isa misunderstanding that there isa cap on federal funds. The planwill have no negative impact onfederal funds.”

DHR UpdatesMRWP

A fter 15 years, Georgia’s MentalRetardation Waiver Program(MRWP) is getting a much

needed tune-up, according to Dr. Stephen Hall, director of theDepartment of Human Resources (DHR) Division of Mental Health,

Developmental Disabilities, Addictive Diseases’ (MHDDAD) Office ofDevelopmental Disabilities.

“Georgia’s waivers for people with developmental disabilities aresome of the oldest in the nation,” Hall said. “They are 15 years old,based on 18-year-old technology. It’s time for them to be changed.”

The Office of Developmental Disabilities is working on changes tothe waiver that they will propose to go into effect July 1, 2006, ifapproved.

The most fundamental change is that the waiver will include theMoney Follows the Person (MFP) philosophy, instead of giving fundsdirectly to providers who then decide which services people willreceive.

“When money follows the people, funding is fair, equitable andmakes sense, and is based on their exact needs,” Hall said.

The MFP approach puts dollars where they are needed. Forexample, under the current structure, people might be receiving

funding fortransportationservices theydon’t need. “If awaiver recipient

has a friend who will drive him to his services, the state won’t haveto pay for that,” Hall said.

Under the proposed new waiver, each waiver recipient willundergo a universal assessment that incorporates the SupportsIntensity Scale, that will let the state know the exact needs of each person.

“Our responsibility is to ensure those with the greatest needsreceive a greater amount of help,” Hall said.

If approved, Hall’s office will phase the waivers in throughout2006, based on the birth date of the recipient.

Hall said the new proposal will give people a lot more freedom tochoose services. “If you want to get a job welding, the waiver willallow you to hire a welder to teach you,” he said.

“The new waivers will allow recipients to work as much as theywant, go to clubs or class. They support you to get to church, andthey work in the evenings and weekends, too,” Hall said.

He doesn’t expect everyone to jump on the bandwagonimmediately. “Ninety percent of the recipients will choose the exactsame program they had this year. The following year, the 10 percentof people who chose new services will talk about them, and about six years out, we expect more than half of the recipients to bechoosing different services,” he said.

Hall expects superior outcomes for people with developmentaldisabilities as a result of this proposed waiver. “When you givechoices, recipients will make the right decision for themselves,”he said. l

“Our responsibility is to ensurethose with the greatest needsreceive a greater amount of help.”

of those changes could be done without a waiver, orwith a more limited waiver that wouldn’t limitaccess to federal dollars.

“There was a lot of discussion initially aboutlong-term care. The disability community was alreadyworking on revising its 1915c waiver on the sametopic,” Lowe pointed out.

In addition, Lowe said that the state is alreadycontracting with two companies who are supposedto develop wellness plans for people with disabilitieswithout a waiver, one of the areas the plan sayswould require a 1115 waiver.

Jacobson felt the state should evaluateprograms currently in place or already proposedbefore jeopardizing funding. “Managed care issupposed to start in April, and the state has alreadybegun disease management for people withdisabilities. The state hasn’t given these programsenough time to evaluate whether they are achievingthe efficiencies they expect. Plus both programs aresupposed to create the savings they’re proposing inthe 1115 waiver,” he said.

“The state is thinking about it backwards – theyare starting with ‘we want a waiver, ’ not ‘where dowe want to be with our program, and what authoritydo we have now to do those things,’” Lowe said.

The plan also proposes that some participantsshare in the cost of their health care. “When statesincrease cost sharing, people get worse care. Theywon’t buy their high blood pressure medicine if theyhave to choose between that and food,” Lowe said.

Lowe believes the only part of the proposedMedicaid Modernization Plan that would require thestatewide 1115 waiver are the health opportunityaccounts. “I understand the rationale for givingpeople rewards. But is it worth giving up access tofederal dollars?” she asked. “I think the dangersoutweigh the benefits.”

Ortiz maintains a number of the proposedchanges would require the 1115 waiver, butappreciates advocates’ input. “Strong advocacy isgood. Without advocacy, we wouldn’t be where weare now. But we need to be clear that there is amisunderstanding that there is a cap on federalfunds. The plan will have no negative impact onfederal funds,” he concluded. l

www.gcdd.org 17

MEDICAID MODERNIZATION


Life could get exceptionallymore fulfilling for 322Georgians with develop-mental disabilities, mental

illnesses and severe medicalsituations at Central State Hospital.But their quality of life is dependentupon the Georgia General Assembly’sapproval of the Department ofHuman Resources (DHR) Fiscal Year2007 Budget Proposal.

DHR hasproposed that thestate of Georgia:1) Transition 135individuals withdevelopmentaldisabilities to thecommunity; 2)Transition 38 adultextended-careindividuals tocommunityplacements; and,3) Close the CraigNursing Home at

Central State Hospital and serve the 149 individualsin appropriate community settings.

“When they came into the hospital, we weren’table to offer the kind of support we can now,” saidGwen Skinner, director of the DHR Division of MentalHealth, Developmental Disabilities and AddictiveDiseases (MHDDAD). “It’s time to look at ourinstitutions very carefully.”

If approved, the proposal to transitionindividuals into a more integrated communitysetting would help fulfill Georgia’s commitment toimplement the Olmstead Decision as mandated bythe Supreme Court.

Quality of LifeHEALTH “People are much healthier when they’reout in the community,” said Renee Peek, remem-bering her deceased husband’s life in and out ofBrook Run, a state-operated institution. Withosteogenesis imperfecta, or brittle bone disease,Leonard Roscoe lived constantly with broken bonesduring his 23-year tenure in the institution.However, once he was in the community, he enjoyedfive consecutive years without a broken bone.

His story was the same with pneumonia. Afterhe left the institution, it was four years before heexperienced a respiratory infection, something hesuffered several times a year at the hospital.

“He would have died a long time ago if he hadnot gotten out,” Peek speculated.

Tracy Peterson also experienced better healthonce she moved out of Brook Run, a year before itclosed in 1997. “When one person gets sick, they allget sick,” explained her mother, Valerie Schwartz.“By the time it makes the rounds, they start gettingsick all over again.”

CONTENTMENT Schwartz compared institu-tional living to dorm living. “I think that first of all,even when people go off to college and live in thedorm – most people don’t want to be there thesecond year,” she analyzed. “They would rather be intheir own place.” She pointed out many freedomsthat most people enjoy daily are taken for granted:a private bedroom, personal belongings, a choice ofwhat to do every day and what to eat for lunch.“None of these exist in the institution,” Schwartzsaid. “Your personal things are not your personalthings at the institution.”

Peterson shares her home with a friend she metat Brook Run. Although Peterson is blind and hassevere mental retardation, she enjoys “watching”musicals with her roommate and listening to music.The two also participate in music therapy twice aweek together.

They take pleasure in simple things like having

Leaving Central StateBy Christina Rosell

Hundreds May Seek Community Living

Leaving Central StateBy Christina Rosell

Leonard Roscoe, ReneePeek, and their four-year-old son Nigel pose for theirlast family photo inJanuary of 2005.

www.gcdd.org 19

lunch on their deck outside, smelling the sweetaromas from the preparation of their favorite meals,having their own clothing that doesn’t get stolenand sitting in soft furniture – all luxuries that didn’texist when they lived in the institution. “I don’tcare how good an institution is, it’s still bad,”Schwartz concluded.

When Roscoe moved into the community at 25,he was finally able to lead his life the way hewanted to. He became a DJ and enjoyed circulatingthe clubs in Atlanta with his wife. According toPeek, they were approached at a show by Mary J.Blige, and the famous singer asked her if she wasRoscoe’s wife. “Mary was one of the few people whosaid to us, ‘Is that his wife?’” Mostly, peopleassumed that Roscoe’s quality of life didn’t include awife or family.

Five years ago, Roscoe and Peek adopted a son,Nigel. “He was the best father!” she said proudly.“We celebrated 10 years out [of the institution] inJanuary and four years with Nigel in February.” Amonth later, Roscoe died. “I’m so glad he had thosefour years,” Peek said.

Skinner feels people are happier outside of theinstitution because of interactions with otherpeople. “They have few, if any, relationships withpeople who are not paid to have relationships withthem [in the institution],” she said. “It’s unnaturalthat everyone who spends time with you is paid tospend time with you. Having relationships enrichesour lives, and it will do the same for theseindividuals.”

FEAR NOT When Brook Run was in theprocess of shutting down, many family members ofthe individuals living there were scared andconcerned. They felt the individuals might not getsupport in the community or even that they likedliving in the institution since they had been therefor so long.

“People fear what they don’t know,” said JanetDeal, regional director of ResCare of Georgia, aservice provider for people with disabilities andformer employee of Brook Run.

“I moved to the community program when itclosed, and I’ve seen individuals that I knew foryears live in the community now and do well.”

Like many parents at Brook Run, Schwartz wasnot in favor of the institution closing at first.Although she didn’t feel completely comfortableputting her daughter in the institution, she felt likeshe was safe there and her basic needs for food andshelter were met. “People who cling to aninstitution cling because that’s all they’ve beenexposed to,” she remembered.

As she became more involved in advocacyhowever, she changed her mind about where herdaughter would live a better life. Ron Cornelison ofOptions for Supported Living educated Schwartz onher choices, convincing her that the brick andmortar of an institution did not provide care as wellas a community could. “I finally felt like it was thebest thing for Tracy andeverybody else,” sheremembered. “I took thebig step to let her come on out.”

Sometime afterleaving the institution, Schwartz’ daughterexperienced some general health problems thatrequired medical attention. “I think that’s everyparent’s fear – ‘If my child gets sick in thecommunity, no one will take care of them’,” sheexplained. “This is a fear parents have, but it’s notfounded. Tracy’s gotten really good care, and thedoctors are willing to prescribe or treat her and bevery patient.”

Now that Tracy Peterson owns her own home, she enjoys sittingoutside during frequent visits with her mom, Valerie Schwartz.

“People who cling to aninstitution cling because that’sall they’ve been exposed to.”

“Your personal things are not your personal things

at the institution.”

“Your personal things are not your personal things

at the institution.”


Now that Peterson lives just 10 minutes away,her mom has more peace of mind. “I manage to seeher more often. On the way to the grocery store Ican drop by and give her a kiss and be on my way,”Schwartz said.

She also appreciates an improved quality ofcare by service providers. “I know when I call herhome, I’m going to speak to the person that’s thereeveryday and that person knows what I need toknow,” she said. “When you call an institution, itcould be luck of the draw who you speak with.”

BEHAVIOR Some people worry about residentswith behavior problems leaving the institution.Skinner says that it’s DHR’s job to work with themto transition to support and therapy.

As a mother of a daughter who was in aninstitution for 21 years, Schwartz talked of her ownobservances on behavior in and out of institutions.“Sometimes the behaviors are caused by theenvironment. If you had to be in a room with 28other people who are yelling and banging andscreaming, and you need attention, the onlyattention you are going to get is negativeattention,” she said. “People who move into asmaller, more structured environment are going toimprove their behavior.”

She referred to a study where a behavioralpsychologist tried to work with patients in aninstitution. It failed because it was inconsistent.The day shift was made up of trained professionalswho knew what the patients were trying to learnand how to interact with them properly. However,the night shift staff wouldn’t follow through with

the program because for them, there was noincentive.

“The payoff is greater in the community thanin the institution,” Schwartz pointed out. Anindividual’s behavior is more likely to change for thebetter when a care giver is in a living situationwhere his or her quality of life depends on theindividual’s positive behavior.

According to Deal, behavior therapies areavailable to individuals who need them when theyare living in a community. “There was a fear at theclosing of Brook Run for medical needs or behavioralneeds…with good planning, all of those needs canbe met,” she said.

THE TRANSITION Skinner is aware thatpeople with family members in Central StateHospital have concerns about the pendingtransition. “I understand worrying,” she said,referring to her children when they left for college.“Are they going to make the transition? Is someonegoing to be attentive to their needs? Is anyonegoing to care about them as much as us?” But, sheinsisted that if the proposal passes, people wouldreceive sufficient support based on their needs.“What our work is, ifthis is approved, is todo a very individualizedassessment of eachindividual and figure outwhat they needindividually.”

Deal said, “Whenfolks come together andlook at the individualand plan based on theindividual, things gowell.” But she addedthat the transitionwould not be a fast oreasy process, and it takessupport and hard work.Importantly, communication between the hospitaland provider network is key.

Peek worked to get her high school sweetheart,Roscoe, out of Central State Hospital when he was25. “It’s important to have a good circle ofsupport,” she recognized. Now she’s raising her sonwho has several mental and physical disabilities.“I’m raising a child on my own who is bipolar andhas severe ADHD…it can be done with the propersupports,” she concluded. “I will die before my childgoes into an institution.”

If the proposal passes, DHR intends to startanalyzing living situations in the community forCentral State individuals immediately. DHR plans towork with the individuals, their families and thestaff at Central State to determine needs forsupport. Individualized supports could include jobtraining and placement, help with cooking orassistance performing the activities of daily living,such as dressing or bathing.

Then, appropriate living situations andlocations would be examined. In cases whereindividuals’ families are involved in their lives,appropriate support systems would be searched foror created in or near the communities of the family

“People who move into a smaller, more structuredenvironment are going to improve their behavior.”

Gwen Skinner, director of theDHR Division of Mental Health,Developmental Disabilities, andAddictive Diseases (MHDDAD)

FEATURE

www.gcdd.org 21

members. “We’re not going to move people untilthere is a good plan,” Skinner said. “We have toconsider each person individually because we aretalking about quality of life.”

Deal and Skinner both recommended thatpeople who are concerned about their familymembers moving to the community should contactlocal advocacy organizations to meet others whohave made a successful transition.

The Georgia Peer Support Project by MHDDAD,with support from the Governor’s Council onDevelopmental Disabilities and disABILITY LINK,gives people access to peers who share their ownexperiences. Some peer supporters offer the story oftheir moves from institutions to various communitysettings. This support is offered through Centers forIndependent Living throughout the state. Thecenters can be found by visiting http://silcga.org/CIL_List.htm or by calling the StatewideIndependent Living Council at 888-288-9780.

THE WORKERS Critics of the DHR proposalworry that there aren’t sufficient communitysupports and are concerned that people at CentralState Hospital will lose their jobs if the proposal isapproved.

As regional director of ResCare, Deal is wellacquainted with hiring care givers to serveindividuals in the community. She agrees that thereisn’t a pool of provider staff just waiting forindividuals to serve. However, she feels that workerswill come forward as needed. “The provider networkdoes have capacity to support people, and it growsas more people need services,” she said.

The care givers at Central State Hospital arethe most obvious people to hire as care givers forindividuals moving out of the institution. “There willbe opportunities for direct support staff andleadership opportunities as well as opportunities tobe a host provider in their own homes,” Deal said.“MHDDAD and local providers are always looking fornew providers of support.”

After 16 years as an employee at a state-runinstitution, Deal started searching for another jobwhen she found out the hospital would close in themid-90s. She visited several community programsand was soon working for the DeKalb CommunityService Board.

“I found that the transition was a good one,”she remembered. “I never will forget the first day Iwent out and visited individuals in their homes, and

met people I had worked with at the hospital 16years earlier. They were living well in their ownhomes in the community. I found it was verysatisfying, and it was a continuation of my career.”

In her new role as a community provider, Dealobserved the individuals’ higher quality of life andrelated with their sense of pride. She spoke of aunit of 16 men at the hospital and how their qualityof life has changed, “…now I see them living in thecommunity with roommates and going to themovies. I regret saying things like, ‘ they are toomedically complex.’”

When the hospital closed a year later, Dealhired several of the staff members she had workedwith as direct support staff forpeople with disabilities livingin apartments and grouphomes. Support staff were alsoneeded for day programs andemployment support.

She concluded that manyworkers at Central StateHospital have been there formany years and enjoysupporting people withdisabilities. She felt thatalthough the hospital isclosing, they can continueworking with people withdisabilities in the community.

According to Skinner, theworkers should not expectdecreases in pay when theytransition to communitysupport roles because the statepay rate is set. Deal noted thatthe pay varies from privateorganizations to state jobs butas is with most jobs, the more highly experiencedworkers garner higher pay rates.

Skinner said the hospital workers will haveassistance in transitioning into community supportroles because DHR plans to coordinate with theOffice of Human Resource Management andDevelopment and the Department of Labor. “Wedon’t want to lose highly trained workers,” she said.She also said the hospital care givers would notneed further training to go out into the community.“It’s more of a re-training as a mindset – you don’tneed a hospital to help people get dressed.” l

Advocates celebrate the right to live in thecommunity by marchingin front of Central StateHospital during the 2004Long Road Home March.

LEAVING CENTRAL STATE


What Advocacy Means to MeBy Bernard Baker,President, People First of Georgia

Advocacy means being able to get what youwant done – done by any means necessary. Some-times that means taking over a public official’soffice by blocking the doors, blocking elevators or any other means necessary. Sometimes it mayeven mean getting arrested for a cause that youbelieve in.

There are also other means of getting yourpoint across. You might hold a meeting, writeletters, make phone calls or have discussions oncertain issues you believe in. It may mean going toseveral different groups and organizations to sitdown in a roundtable discussion about the issue youwant to work on. But it means never giving up onyour dreams, your goals or what you believe in. Before I joined any groups, I was fighting my ownpersonal issues as my own self-advocate. Self-advocating by myself was harder.

One thing my mom and I advocated for wasaccessible transportation so I could go to the doctoron the bus. Mom had to carry me on her hips on thebus, so we advocated for accessible transportation.We also advocated that I be put into a regularschool classroom with kids without disabilities. Thatdidn’t happen for a long time.

When I want to elementary school, I was put ina special class for kids with disabilities. I neverwent to a typical class until high school, when myhomeroom teacher was determined I should attendregular classes. He carried me up the stairs so Icould get to class. Without him, I wouldn’t havebeen able to take normal classes and be included atWalter F. George High School.

Advocacy also means finding a group of peoplewho believe in the same issue because they havesimilar problems. The main goals are to get whatyou want changed and get your issue heard. It’sstill hard to create change, but I have more supportin groups than I had alone, and there’s more powerin numbers.

I am now president of People First of Georgia.ADAPT and People First are teaming with othergroups to work to convince legislators to passMoney Follows the Person legislation, so people can

live in the community instead of institutions andnursing homes. We are also part of the Children’sFreedom Initiative so we can make sure children nolonger have to go to institutions and nursing homes.I will not rest until I see people getting what theywant, when they want and how they want it. Ibelieve in self-determination.

Since I’ve been advocating as part of a group,I’ve helped convince Greyhound to put lifts on itsbuses, MARTA to purchase more buses with lifts andairlines to be more sensitive to the needs ofpassengers with disabilities.

There’s still a lot of work to be done. I’d like tosee more accessible transportation for people withdisabilities. We have MARTA in Atlanta, but I’d liketo see more private companies be more accessible topeople with disabilities and not be so expensive. Iwant to start my own transportation company andhave it operated by people with disabilities. I’d liketo convince tour buses to add lifts so people withdisabilities can take tours. I’d also like moreaffordable and accessible housing with no-stepentrances for people with disabilities.

Up until now, my biggest advocacy successeshave been working on a committee for MARTA tohelp them change what they need to change andadvocating with ADAPT to help get lifts onGreyhound buses.

That’s what self-advocacy means to me, and I’vebeen a self-advocate all my life. If I had to giveadvice to new self-advocates, I’d say the best thingis to listen to older advocates, learn from them andwork together as a team. l

Bernard Baker is thepresident of People Firstof Georgia, and was oneof the founders of thestate and nationalPeople First, as well asthe Atlanta ADAPT.He is a volunteer forGeorgia Voices thatCount and a member ofthe MARTA ENDAdvisory Board forParatransit and theHandicapped AccessAdvisory Committee.Baker, who has cerebralpalsy, lives in Atlantaand has three children.

“It’s still hard to create change,but I have more support ingroups than I had alone, andthere’s more power in numbers.”

A New and Veteran Advocate

Share Their Thoughts on Advocacy

Advocacy: One Girl’s VoiceBy Jordan Schwartz,Self-Advocate

Jordan Schwartz is a12-year-old girl whohas Turner’s syndrome,a rare genetic disorderin which women aremissing part or all of their second Xchromosome. She is a passionate advocateon behalf of herself and others with thesyndrome.

At seven, my first try at theater was as aseagull. Fun, but hard work too, and with theater,my mother’s only rule was commitment. She saidthat if I got a part, then people were counting onme, and I had to do my best and could not quitmidway. At the end I could choose to never do itagain, but about 157 performances later, I guessthat I decided to stick to it. It’s fun working withdifferent casts and friends, and now I see that anearly lesson in commitment was my first lesson inwhat advocacy means to me.

I’ve learned a lot through theater, and I got tothinking about the “Whos” in Dr. Seuss’s Whoville,after seeing Seussical performed by my classmates atAtlanta Girls’ School. When one Who wanted to beheard, only Horton heard. No one else would helpuntil all the Whos in Whoville committed to jointogether to be heard, then Whoville was saved. Thisplay gave me an idea, and as a legislative page, Iknew that there is a process to get the word out, toget information, to get answers and to be heard. Mytheater background gave me the confidence to gopublic with my message and reach out with my Website, ugrowgirl.org as a way to be heard.

Advocacy is of value to many aspects of aperson’s life, whether your reason to advocate is fora cause or for yourself, or as in my case, for both.Last year, at age 11, I found out that I had Turner’ssyndrome, and after my health insurance deniedmedically necessary medication, I worked with myfamily to see if the Katie Beckett (Deeming) Waivercould help, but I was denied there, too. It was scaryknowing that I only had a few years when thetherapy could make a difference. I was running outof time, and it felt like no one was listening.

The Governor’s Council on DevelopmentalDisabilities was there to listen, and Sen. Judson Hill

(R-Marietta) has asked me to page for him thissession so I can listen, learn, improve my advocacyskills and be heard. Through ugrowgirl.org, I canbuild bridges between support systems whileproviding encouragement and a venue forexpression.

Encouragement matters because individualeffort, as small as it sometimes seems, can make adifference and will leave a legacy. I know that myadvocacy and commitment can link together to forma strong bond so that I can work toward commun-icating an effective message of encouragement,compassion and tolerance, and this poem expressesmy ideas on reaching my goal.

To learn more visit: ugrowgirl.org andwww.childrensbilingualtheater.org. l

“Encouragement matters becauseindividual effort, as small as itsometimes seems, can make adifference and will leave a legacy.”

www.gcdd.org 23

u grow girlby Jordan Schwartz

u grow when you serveu grow when you teach

u grow when you learnu grow when you reach out to

others and share who you are.

Live your life extending your

arms in friendshipand service.

Learn that when you give of

yourself, U GROW GIRL!

Dian

a Sc

hwar

tz

Corporate America wasrecently cautioned of theeffects of neglecting thedisability market. “In the

next few years in this country, you’llsee a war for talent and a laborshortage, and yet the disability marketis untapped,” Emily Myers-Briggs ofBriggs & Associates predicted.

Top executives from large corporations inAtlanta as well as owners of small and mid-sizedbusinesses were invited to the 2005 Discovery TourOctober 25, sponsored by the Governor’s Council onDevelopmental Disabilities (GCDD).

The fifth annual Discovery Tour began at theMartin Luther King, Jr. National Historic Site, andcoincidentally, the day after civil rights activist RosaParks died.

Discovery Tour co-host Gloria Johnson-Goins,vice president of diversity at The Home Depot

Corporation,said Parksshould berememberedas “a symbol that everyone

still needs opportunities to ride the bus.” She went on to say that corporations should

see people with disabilities as people who can beproductive employees. “We want a Georgia thatemploys all its citizens who want to work.”

Disability Employment Today

Kate Gainer, disABILITY LINK advocacycoordinator, demanded businesses give people withdisabilities a chance to work and be productive.“Ten years ago, we were told we would be saviors of

the workforce, and yet today, the unemploymentrate for people with disabilities is 70% – way belowthe national average!” she said. “It’s time theprivate sector kept its promise. I challenge you toprovide us with the opportunities to become full,productive Americans.”

Discovery Tour Co-Host Dave Altman, vicepresident of corporate communication at theSouthern Company, said his company was activelyrecruiting people with disabilities.

“There are ways to recruit and employ peoplewith disabilities, but recruiting managers don’t knowhow. We’ve got to raise awareness with people inbusiness,” he said.

Later, tour participants went to Emory CrawfordLong Hospital and were introduced to a youngwoman whose main responsibility is to care for IVpumps and a man who stocks carts foranesthesiologists. Another young woman with adisability enjoys working with people. “I escortpatients to the pre-surgery area and recovery area,”said Adetola Shobaloju. Although it is hard for herto remember routes because of her disability, she isable to navigate the hallways with a system ofstrategically placed American flags that point her in the right direction.

These workers were hired in the last year, after Diane Prindle, regional director of Briggs &Associates, a specialty employment agency,approached Chief Operating Officer AlbertBlackwelder. She requested that Blackwelder fill oneof the hospital’s business needs – a need fordependable employees – by hiring people withdisabilities. The request was based on a successfulhiring program called “Project SEARCH” at CincinnatiChildren’s Hospital Medical Center. Prindle toldBlackwelder, “We affect the bottom line.” She waspleased that he immediately grasped the idea and“took action.”

After nearly a year of employing people withdisabilities, Blackwelder examined the program’ssuccess. His original goals at the beginning of theprogram were met: 1) full time equivalents were notincreased (a benchmark to measure against other


Executives DiscoverPeople with Disabilities

“In the next few years in this country, you’llsee a war for talent and a labor shortage,and yet the disability market is untapped.”

Executives DiscoverPeople with Disabilities

Can and Want to WorkBy Christina Rosell

hospitals) and 2) costs had not increased. “Onething I didn’t ask for, we’ve gotten: an increase inquality,” he noted. “What [Briggs & Associates] wasdoing was nodifferent thanwhat we’vebeen doing –when we have an emptyjob, we look for the rightperson to fill it. Unfortunately, we were excluding a whole group of people because they didn’t fit thedescription,” Blackwelder said.

Ultimately, he found that hiring individuals wholove their jobs, enjoy the people they work with andfeel respected in their departments as contributorsactualized a measurable decrease in costs. “Ourpump costs are a lot less than Emory University’sbecause the IV pumps here are cared formeticulously,” he said.

Blackwelder also found other employees weremore satisfied. He noticed an increased appreciationfor the new positions among the anesthesiologists.“Anesthesiologists have a toolbox – they are a toughthing to maintain and it’s a problem when one goesto pull out a tool, and it’s not there,” he explained.“We don’t have that problem anymore.” Blackweldersaid Maurice Goodwine, who has a disability,meticulously ensures the carts are adequately andneatly stocked, allowing the anesthesiologists tobetter perform their jobs.

Supported Employment Amidst a shortage of nurses and operating room

(OR) technicians, Prindle suggested removing non-medical tasks from their daily responsibilities suchas stocking carts or cleaning equipment. Byremoving these tasks and assigning them to otherworkers, the hospital could function more efficientlywith less nurses and OR techs.

“I agreed to do this, but put some responsi-bility back on Diane.” Blackwelder said. “I can’t

increase my costs – this is a low margin business.” Briggs & Associates worked with the hospital

staff to determine what roles needed to be filled.Then, they coordinated a work-study program withDeKalb County schools. The first class of eightstudents spent time in the hospital classroom andupon graduation, each student was hired to fill aposition that fit his or her abilities.

The hospital provided a classroom, but Briggs &Associates handled all necessary training. “We didn’thave to pay for that!” Blackwelder said.

Because of the program’s success, EmoryUniversity Hospital currently has a class in sessionand plans to hire the graduates sometime this year.

Assistive TechnologyThe next stop on the Discovery Tour showed

how assistive technology (AT) can make workingpossible for people with disabilities. Manycompanies see AT as a financial barrier to hiringemployees with disabilities. However, in many cases,AT can be as simple as apiece of plywood to prop upa piece of equipment.

“Assistive technologyplays a vital role in helpingpeople with disabilities,their families and theiremployers,” Altman said.

Anil Lewis, president ofthe Client AssistanceProgram, demonstrated someof his AT. Lewis, who lost hiseyesight in his mid-20s,earned an M.B.A. at Georgia State University and iscurrently working on a law degree with the help ofhandheld electronic devices with Braille and WebCT.Many institutes of higher learning now utilizeWebCT, an internet-based system that allowsprofessors to post notes and handouts online beforeclass. This permits students with visual disabilitiesto read along with the rest of the students duringclass, something they were unable to do in the past.

www.gcdd.org 25

The art of Lois Curtis ispresented to Gloria Johnson-Goins of The Home Depotand Dave Altman ofSouthern Company by GCDDfor their leadership in hiringpeople with disabilities and for co-hosting theDiscovery Tour.

“Unfortunately, we were excluding a whole group of peoplebecause they didn’t fit the description.”


DISCOVERY TOUR ‘05

Now he happily calls himself a “gadget man.”Although some AT can be as simple and as

inexpensive as jar opener grips, others can be morecostly. ReBoot – Assistive Technology ResourceCenter (ATRC) in Tucker, Ga., offers a “try before you buy” option so people don’t make costlyinvestments in the wrong technology.

Eric Krugg demonstrated his equipment for tourparticipants. He tested a device that helped himspeak, a challenge since his brain was injured in anaccident. His device was on loan for a month. “Myprimary goal is to get a job to have enough cash tohave my own house,” he said with the help of thedevice. However, he wasn’t sure the equipment wasworth the investment and thought he might try outother equipment before purchasing it.

AttitudeDiscovery Tour participants learned about

stereotypes and attitudes and how they affectpeople with disabilities in the workplace. Beforebecoming an attorney for the Georgia AdvocacyOffice, Crystal Beelner lost count of how many timesshe was interviewed. With her resume, she was ableto land an initial interview, but once people sawher, a woman with dwarfism, she wasn’t calledback for a second interview. “I’ve had everyone,

including judges, make rude remarks,” she said.“That’s why it’s so important to cross attitudinalbarriers.”

She realized she had to make otherscomfortable about her disability before theycould see her for who she was – a qualifiedattorney. “Coworkers have to be comfortable,”she said. “They’re scared thinking, ‘I mightoffend them.’ Chances are, you will. That’s justpart of life.” But, she learned that beingupfront with people about her disability on thephone helped increase their comfort level andher chances of getting a second interview.

Lewis discussed a different kind of attitudechange. When he lost his eyesight, he thoughthe had lost his way of identifying himself. As a student, Lewis could read an unbelievable750 words per minute. “I can’t do that with

Braille or my fingers would explode!” helaughed, only half joking. “I had to conquer

my attitude … I learned the only thing that changedwas I couldn’t see.” He soon realized he could stillaccomplish his goals, he would just need a little ATand a better attitude to do so.

Visitable HomesUnfortunately, many Georgians in wheelchairs

miss out on social activities because their familyand friends have steps at the front, back and garagedoors, skinny doorways and tiny bathrooms.

The last stop on the 2005 Discovery Tour was a“visitable” town home community in Decatur. EastLake Commons has simple features that allow peoplein wheelchairs to be able to visit, including no-stepentrances (not necessarily the front door), widerdoorways and bathrooms with room for wheelchairs.

Eleanor Smith, a community resident andfounder of Concrete Change, a nonprofit organ-ization dedicated to making homes visitable, saidrenovating a home to be visitable can cost thou-sands but building one from scratch might cost justa few extra dollars for a wider doorframe and door.

Employment SupportAmong adults with disabilities ages 18-64,

three out of 10 (29%) work full or part-time,compared with eight out of 10 (79%) of thosewithout disabilities – a staggering gap. Comparethis to the number of people (16+) with disabilitieswho are unemployed, 72% of which would prefer towork according to a 1998 Survey of Americans withDisabilities by the National Organization onDisability and Louis Harris & Associates.

“We can’t have help getting people into jobswithout the support of the corporate community,”said Tom Seegmueller, GCDD chairperson. At leastone tour participant connected with the disabilitycommunity’s message by the end of the tour. “I’mseeing possible opportunities for small businesses,”said Pamela Goldstein Sanchez of Pam SanchezDesigns, Inc. in Atlanta. She concluded thatsomeone with a disability might be able to help herorganize her resource library or help clean herhusband’s tools at his orthodontic practice.

“There are hundreds of individuals withdisabilities who want to work,” said Beelner. “Theyhave the ability to adapt to your organization.” l

When Anil Lewis lost his eyesight, he thought he would never succeed in the business world.Now he attends law school with the help of assistive technology.

Crystal Beelner had manyinterviews before an

employer saw beyond herdisability and hired her.

www.gcdd.org 27

CALENDAR OF EVENTS

JANUARY January 27 Autism Workshop – AConference for Parents &Professionals Woodstock, GA 770-591-9552 www.behavior-consultant.com/ablls.htm

January 27-29Division E MidwinterConference – “The Illusion of Therapy: Discover the Magic Within”Emerald Pointe, Lake Lanier Islands, GA

FEBRUARYFebruary 1 Healthy Mothers, HealthyBabies Coalition ofGeorgia’s 19th AnnualLegislative Breakfast“Sloppy” Floyd VeteransBuilding Atlanta, GA 770-451-0020 www.hmhbga.org

February 2Wright’s Law – SpecialEducation Law &Advocacy Seminar Gwinnett Convention Center Duluth, GA www.wrightslaw.com

February 3-4Autism Society ofAmerica – GreaterGeorgia Chapter Annual Autism-AspergerConference Gwinnett Convention Center Duluth, GA [email protected]

February 6 Mental Health Day Georgia State Capitol Atlanta, GA404-656-8508

February 8-9 Poor People’s Day Georgia State Capitol Atlanta, [email protected]

February 14 Money Follows the People Day Georgia State Capitol Atlanta, [email protected]

February 163rd Annual Under OneRoof Housing Conference– The Nuts & Bolts ofGeorgia’s HousingResources 478-825-6954 [email protected]

February 23Disability Day at the CapitolAtlanta, GA404-657-2126www.gcdd.org

MARCHMarch 1-4Better All Together –Inclusion Works!ConferenceUniversity of GA – Continuing Ed. CenterAthens, GAwww.gcdd.org

March 3-5The 2006 Josephine L. Taylor LeadershipInstitute

Renaissance Atlanta HotelAtlanta, GAwww.afb.org/jltliregistration.asp

March 18-23ADAPT National Actionagainst InstitutionsHilton Hotel, Nashville, TN512-442-0252www.adapt.org

APRILApril 17-182006 MultiplePerspectives on Access,Inclusion & DisabilityOhio State UniversityColumbus, Ohio

[email protected]/conferences.htm

April 20 -22Governor’s Council onDevelopmentalDisabilities QuarterlyCouncil Meeting Public Forum - 7 PMAlbany, GA404-657-2126 www.gcdd.org

To include events throughmid-July in the nextedition, please send [email protected] by March 6.

One size fits all didn’t fit Johnny.


LEGAL UPDATE

E ven though an individual may be foundlegally “incapacitated,” it does notnecessarily follow that the individual needsa guardian. There are many other ways to

assist individuals to make decisions withoutresorting to this legal process which removesfundamental rights.

Person-Centered Planning (PCP)The best way to avoid guardianship is to

assure enough support for individuals from families,friends and others so the individual’s preferencescan be honored, respected and implemented. This isgenerally done through a process called person-centered planning (PCP).

Through PCP, individuals tell professionals andother interested people what they want and need.If the individual is unable to direct or participate in this process, the people closest to the individualconfer about what they believe the individual wants and needs based on their knowledge andobservations of the individual. They then assureimplementation of the plan.

Family ConsentHospitals and medical centers typically have

family consent policies that address who can giveconsent for medical treatment if it is determinedthat an individual is not competent to give suchconsent. Usually, immediate family members are theones who are authorized to give consent, followedby more distant relatives and close friends.

There are no legal reasons why other providers,such as mental health programs and school systemscould not also implement family consent policies(and some do). As providers are beginning toaddress self-determination, choice, and areimplementing person-centered planning, they arealso implementing family consent policies.

Durable Powers of AttorneyDurable Powers of Attorney are executed

through legal documents in which individuals givethe power to authorize certain actions on theirbehalf to another individual if they become unableto make their own decisions. A variety of powerscan be given in this way, but the most common aremedical and financial.

FinancesWhen an individual is determined to be unable

to handle money, a number of alternatives can beexplored. For someone receiving governmentbenefits, a representative payee may be appointedto receive and disperse the funds.

Durable Powers of Attorney for Finance can beeffective if executed before the person becomes“incapacitated.” These are documents in whichindividuals designate someone to handle theirmoney in the event they become incapacitated. Ifsuch a document was not executed in time (beforethe person became incapacitated), electronicdeposits and automatic bill paying might bedesirable. Or, it may be possible to hire a personalmoney manager to receive funds and pay bills.

If no trust was devised, and no power ofattorney was executed, it is possible to havesomeone appointed a conservator or guardian of theproperty by a court to handle the estate. Theguardian of the property would be accountable tothe court and would not affect as many personalrights as guardian of the person under Georgia law.

For those with developmental disabilities ormental illness, however, a “special needs” trust maybe the best route to handle money. Such a trust canbe established to enhance the individual’s life whileprotecting eligibility for Supplemental SecurityIncome (SSI) and Medicaid. These trusts are anexcellent way for parents to plan and monitor theirchild’s life after they are gone. Parents candesignate money to pay for a person or agency tovisit and report to the trustee about the well-beingof the recipient. Families can specify that the reportinclude such things as whether their child is happyin their home, whether they are getting out into thecommunity or whether they are given enoughopportunities to live as independently as possible.By establishing such a trust, parents providesupplemental income to their child above SSI andMedicaid, and also achieve peace of mind aboutwhat will happen to their loved one after they aregone.

In summary, our goal is to assist people withdisabilities build caring relationships among family,friends and others. This support circle helps assurethrough these alternatives that people’s preferencesand wishes can be honored, respected and imple-mented without resorting to legal guardianship. l

Alternatives to GuardianshipBy Kathleen Harris

Kathleen Harris is a disability law

attorney fromMichigan who served

on the MichiganSupreme Court TaskForce on Guardian-

ship and also onlegislative work

groups to reformguardianship law.

Currently, sheconsults with statesabout alternatives to

guardianshipthrough her work

with the Center forSelf-Determination.She also serves onnumerous boards

of nonprofit agenciesthat promote civilliberties and self-determination for

people withdisabilities.

www.gcdd.org 29

pg. 11 pg.18 pg. 24pg. 14

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

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

State GovernmentDepartment of Community Healthwww.dch.state.ga.us/404-656-4507

Department of Human Resourceswww.dhr.georgia.gov404-656-4937

Department of Laborwww.dol.state.ga.us

General Informationwww.georgia.gov

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

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

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

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

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

AdvocacydisABILITY LINKwww.disabilitylink.org404-687-8890

Georgia Voices that Counthttp://www.disabilitylink.org/docs/voices/voices.html404-687-8890, ext. 114

Atlanta Alliance on Developmental DisabilitiesLegislative Action Centerhttp://www.ciclt.com/aadd/404-881-9777

Georgia Advocacy Office (GAO)www.thegao.org404-885-1234800-537-2329

People Firstwww.disabilitylink.org/docs/people.html404-687-8890404-687-9175 TTY800-239-2507 (V/TTY)

U Grow [email protected]

Unlock the Waiting Lists!www.unlockthewaitinglists.com877-WAITLIST

AssistiveTechnologyReBoot – ATRCwww.reboot-atrc.org770-934-8432

Center for Assistive Technology& Environmental Accesswww.catea.org404-894-4960

Georgia Tools for Lifewww.gatfl.org800-497-8665TDD: 866-373-7778Atlanta Metro TDD: 404-486-6333

Civil RightsThe Martin Luther King, Jr.Historic Sitewww.thekingcenter.org404-526-8900

CommunitySupportResCare of Georgia’sOptions for Supported Livingwww.rescare.com770-908-2481

Medicaid ReformGeorgia Budget & Policy Institutewww.gbpi.org404-420-1324

Georgia Coalition United for a Responsible Budgetwww.gacurb.org

MRWP ChangesDepartment of Community Healthhttp://dch.georgia.gov/00/channel_title/0,2094,31446711_37280543,00.html

Peer SupportCenters for Independent Livinghttp://silcga.org888-288-9780

SupportedEmploymentBriggs & Associateswww.briggsassociates.org

CobbWorks!www.cobbworks.org770-528-8072

Universal DesignConcrete Changewww.concretechange.com

EasyLiving Homewww.easylivinghome.org404-723-5503

Universal Design Alliancewww.universaldesign.org770-667-4593

RESOURCES

pg.18

pg.18


If you are interested in being

a sponsor for Making a Difference

magazine, please call Christina Rosell

@ 770-578-9765

Thanks to OUR

SPONSORSfor their

Support.

SUPPORTING THE DISABILITY COMMUNITY

www.gcdd.org 31

SPONSORSHIPS

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

770-394-9791 • www.childrens-services.com

“Complete developmentaloccupational therapy

for children –toddlers through teens.”

Thanks to OUR SPONSORSfor their Support.

Governor’s Council on Developmental Disabilities2 Peachtree Street, NW, Suite 26-246Atlanta, 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 3 • Winter 2006

Disability Day at the CapitolYour Vote Makes a Difference!

FEBRUARY 23, 2006

A ccessible voting is an important issue forpeople with disabilities. Join with hundreds ofother self-advocates from across the state and

let your legislator know how you feel on that issue andothers that affect the lives of people with disabilities.

For more details, or to register for

Disability Day at theCapitol, see page 7.

Disability Day at the CapitolYour Vote Makes a Difference!

Documents

Making a Difference Magazine || Winter 2006