Making a Difference Magazine || Spring 2006

GEORGIA GOVERNOR’S COUNCIL ON DEVELOPMENTAL DISABILITIES

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

SPRING 2006

www.gcdd.orgwww.gcdd.org

Features9Legislative UpdateLegislators vote to fund morehome- and community-basedservices for people withdisabilities

121,600 Voters Rally for a Better Quality of LifeA record number of people withdisabilities advocated forthemselves and others duringGCDD’s eighth annual Disability Day at the Capitol.

18GCDD Responds to Needfor Direct SupportProfessional TrainingGCDD rolls out a direct supportprofessional curriculum at Georgiatechnical schools.

23Attendees Find Life isBetter All TogetherSelf-advocates, family members,direct support staff and expertsmet in Athens to discuss and learnabout inclusion innovations atGCDD’s seventh Better All Togetherconference.

4GCDD ViewpointDirect Support a Key IssueDirect support professionalsplay important role in livesof Georgians withdisabilities.

5From the GCDD ChairAdvocates Make aDifference on Disability Day GCDD Chair promotessolidarity

6Advocates ShareStoriesStoryCorps records disability community.

7Around GCDDGCDD welcomes new staff,council members.

8News and EventsBill Includes IncreasedDisability Spending;Visibility study in Atlanta

16PerspectivesDirect support professionalsand their clients enricheach others’ lives.

26Expert AdviceDavid Pitonyak explores theimportance of belonging.

28Straight TalkPhillip Modesitt urgesothers not to give up.

DepartmentsIn Each Issue3 Letter from

Governor Sonny Perdue

8 Editorial Cartoon

27 Calendar

29 Resources

2 Making a Difference • Spring 2006

TABLE OF CONTENTS

12

18

www.gcdd.org 3

FROM THE GOVERNOR

Volume 6, Issue 4 Spring 2006

A quarterly magazine of theGovernor’s Council on

Developmental Disabilities

The Governor’s Council on DevelopmentalDisabilities collaborates with Georgia’scitizens, public and private advocacyorganizations and policymakers to

positively influence public policies thatenhance the quality of life for peoplewith disabilities 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]

Valerie Meadows SuberEditor-in-Chief &

Public Information [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 Smith BuxtonManaging Editor

O’Neill Communications, [email protected]

O’Neill Communications, Inc.Design & Layout

Brandon D HuntCartoonist

To Georgia’s Disability Community,Georgia has become the first state in the union to adopt the Supports Intensity

Scale (SIS) which helps provide support services to citizens with developmentaldisabilities based on their individual needs. This is a historic breakthrough for peoplewith disabilities who will now receive support services based on anin-depth understanding of their individual lives and interests.

Georgia’s new approach to defining service needs is beingapplauded by the American Association on Mental Retardation.This association developed the SIS to help case managers and otherprofessionals focus on the specific needs and goals of eachindividual.

Dr. Stephen Hall, Director of the Georgia Office ofDevelopmental Disabilities, in the Department of Human Resources’division of Mental Health, Developmental Disabilities and AddictiveDisease, is overseeing the deployment of SIS, which he expects tohelp provide a fair, equitable and transparent system of fundingbased on a person’s exact support needs. Under his direction, thestate of Georgia began using SIS last November and expects 12,000citizens with disabilities to benefit from this new approach.

Part of this improved service delivery method will be findingappropriate support staff for people with disabilities. Georgia’sDepartment of Technical and Adult Education and the Governor’s Council onDevelopmental Disabilities have teamed up to offer certification programs for direct support professionals to ensure people have access to quality direct supportstaff. The curriculum behind these programs focuses on person-centered planning and is expected to improve the quality and professionalism of support throughout the state.

The many advocates for people with disabilities continue to have a very positiveand dramatic effect on state policies and programs designed to serve the disabilitycommunity. Your stories and passion for your cause have been crucial during thelegislative sessions over the past three years.

Providing support services on the individual level is critical to improving thequality of life for people with disabilities, and we need to continue working togetherto ensure the continued improvement of state programs. I look forward to ourcontinued partnership in improving the services provided to Georgians withdisabilities.

Sonny PerdueGovernor

G OV E R N O R ’ S COUNCIL ONDEVELOPMENTALDISABILITIES

S hortly before this edition of Making a Difference wassent to you, the Georgia General Assembly finishedthe 2006 legislative session. Legislators spent the

last 40 days debating budget proposals and legislationabout how best to govern and support Georgia’s citizens.While many predicted a short session because of the

upcoming elections, the session dragged on to the closing days of March. Unlike the pastfew years there were bits of hope as a growingeconomy added millions of dollars to the tax base.

For us in the disability community, it wasa session highlighted by new funds for homeand community-based services for people withdevelopmental disabilities and physicaldisabilities. And while this session found usonce again fighting to make sure thosechildren who receive support through theKatie Beckett Waiver continued to getsupports paid for through the Medicaidprogram, this time we hope we have endedthe debate about their needs and the role of

Medicaid. All of this and more were celebrated on DisabilityDay at the Capitol which saw over 1,600 people from acrossGeorgia converge on the Capitol in a spirit of camaraderieand great expectations. Elected officials, chants andremembrance of those who passed away during the last yearfilled the day. A new award was presented honoring theleadership of those with disabilities. Beth and Bill Tumlinpresented the first Self-Advocate of the Year Award inmemory of their daughter Natalie who passed away October1, 2005. It was no surprise that Mark Johnson was the firstrecipient of this award. We hope this award will continue tobe a Disability Day at the Capitol tradition for many years tocome.

The Tumlins also helped accentuate the growing needfor those who provide support to people with disabilities.The House of Representatives unanimously passed HouseResolution 1401 recognizing Natalie Tumlin’s spirit that ledmany advocacy efforts in Georgia. This resolution alsorecognized the role that direct support professionals playedin Natalie’s life and in the lives of thousands of people withdisabilities and older adults. The resolution recognized the“need, importance and significant impact of a qualified,

available and adequately compensated direct supportprofessional work force as critical to the support of peoplewith disabilities living in their communities.”

We first began writing about the growing need fordirect care professionals in 2001 shortly after a conferencesponsored by the Georgia Alliance on Staffing Solutions. Atthat conference, Robyn Stone, former assistant secretary ofHealth and Human Services and Amy Hewitt with theUniversity of Minnesota Institute on Community Integration,presented state and federal statistics that supported theneed to find better ways of recruiting and retaining directcare professionals. Both suggested that the solution does

not exist in any one approach but instead must include (1) direct care professionals feeling that they are valued byboth their employers and by individuals receiving support,(2) an ongoing training program that includes bothcurriculum-based training and hands-on support, (3)opportunities for advancement and (4) fair wages for thequality and quantity of the work accomplished.

The need for qualified direct support professionals willbecome more apparent as Georgia moves toward more self-directed supports for individuals and families. As people aremore in control of who provides supports and can choosenon-traditional outlets, we expect an increased need fortraining and support for those providing personal care. We highlight two projects that the Governor’s Council onDevelopmental Disabilities has funded over the past severalyears to address this issue. The Direct Support ProfessionalCertification Program has been implemented in fivetechnical colleges, with several others waiting to come onboard. This project allows those already providing directsupport or those thinking about choosing this as a career tobetter their skills and knowledge through both classroomand hands-on experience. In addition, GCDD funded theAlliance of Direct Support Professionals as a way for directsupport staff to meet, discuss issues of concern and worktogether to find solutions.

As always, you can reach me at 1-888-275-4233 or youcan e-mail me at [email protected].

GCDD VIEWPOINT


Good Direct SupportProfessionals a KeyDisability Issue

“The need for qualified direct supportprofessionals will become moreapparent as Georgia moves toward moreself-directed supports. . .”

Eric E. JacobsonExecutive Director, GCDD

FROM THE GCDD CHAIRPERSON

www.gcdd.org 5

S ome wise sage once declared, “If we continue todo what we have always done, we will continue toget what we always got.” For someone who has

everything they need, continuing to stay the course maymake sense. However, for those of us who have beeninvolved as advocates in the legislative process, maybeit’s time to make a change in our approach.

Fortunately for us, Disability Day at the Capitol hasevolved into the perfect platform to deliver our “new &improved” message. On February 23, more than 1,600Georgians with disabilities, their family members, friends,neighbors and support professionals crowded into theCapitol and the Georgia Freight Depot to meet withlegislators regarding a wide array of issues affecting theirlives and the lives of those they love and care for.

The Governor’s Council on DevelopmentalDisabilities, Georgia Direct Support Professionals Alliance,Unlock the Waiting Lists!, The Children’s FreedomInitiative, People First, Atlanta Alliance onDevelopmental Disabilities, Georgia ARC and localchapters, Atlanta ADAPT as well as Katie Beckett parentswere just a few of those in attendance.

A quick glance at those in attendance at the depotattests to the fact that the event has become the largestof its kind during the legislative session, drawing notonly a record number of advocates, but an impressivecollection of legislators as well. Lieutenant GovernorMark Taylor, Speaker of the House of RepresentativesGlenn Richardson, Senate President Pro Tempore EricJohnson, Chairman of Appropriations Rep. Ben Harbin

and Chair of the Subcommittee onAppropriations for Health and HumanServices Rep. Jeff Brown spoke withthose in attendance after addressing thegathering. Other legislators could beseen meeting with their constituentsthroughout the day.

Mark Johnson of Alpharetta wasrecognized for his role as a pioneer andleader within and beyond the Georgiadisability community during the morningceremonies at the Capitol where hereceived the first Georgia Self-Advocateof the Year Award.

At the depot as Terry Langley, Nandi Isaac and HeidiMoore put a very personal perspective on the issuesfacing Georgia’s disability community, I began to reflecton a concept that has been kicked around for a numberof years. How often have we said that what we want andneed for ourselves and those we love are no differentthan those things that everyone wants and needs if truequality of life is to be realized? What if next year whenthis eclectic group once again gathers under the golddome we came united around 10 common goals andexpressed them with the solidarity of a unified message?Would this shared mantra allow lawmakers to grasp notonly the extent of our need but the potential strength ofour unified vote as well?

For years we have believed that if we spoke andvoted as a “bloc” we would move from the perceivedstatus of a political minority to the potential status ofone of the nation’s largest political majorities. I believeit’s time we prove our point.

Advocates Make a Differenceon Disability Day

“What if next year when this eclecticgroup once again gathers under the golddome we came united around 10common goals and expressed them withthe solidarity of a unified message?”

Tom SeegmuellerChairperson, GCDD


ADVOCATES SHARE STORIES

“This is big, really big,” were Al Duvall’sheartfelt words when he arrived to make history atthe StoryCorps mobile recording trailer parked at the Martin Luther King Jr. National Historic Site in March.

Duvall, who is part of the Institute on HumanDevelopment and Disability (IHDD) Experts On Disa-bility Speakers Bureau, was one of five individualsselected by the Governor’s Council On DevelopmentalDisabilities (GCDD) to participate in the nation’slargest oral history project. The process calls for aclose associate to pose questions to draw out thestoryteller. Duvall’s friend, Charles Hopkins of theDepartment of Human Resources, interviewed him.

StoryCorps has gathered 5,000 of the 250,000oral histories it plans to record by the year 2013.The American Folklife Center at the Library of

Congress will house the stories, and some will bebroadcast on National Public Radio or local affiliates.

Kate Gainer, of disABILITY LINK, rushed homefrom a meeting in Nashville to be interviewed byher niece Felycia Thornton. “I’m glad GCDD managedto reserve time in this projectfor people with disabilities,”she remarked. “This is tooimportant to miss.“

Reservations on a firstcome first serve basis filledup fast. GCDD called theStoryCorps office to explainthat an oral history ofAmerica would be incompletewithout the stories of peoplewith disabilities. StoryCorpsagreed and made reservationsfor people with disabilities.

Suggested questions were

provided, but notrequired. MiaNobbie, 21, andher mom, GCDD’sDeputy DirectorPatricia Nobbie,D.P.A., usedphotographs tohelp spark Mia’smemory ofimportant partsof her story theywanted toinclude.

StoryCorpsagreed to lowerthe age limit toallow 8-year-oldAmari Lewis to interview his dad, Anil Lewis, chairof the Statewide Independent Living Council (SILC)and president of the National Federation of theBlind (NFB) of Georgia.

IHDD coordinator Jenny Manders interviewedpoet Gail Bottoms, former GCDD council member andan IHDD expert speaker. Bottoms was pleased tolearn that the scope of her conversation would notbe limited to answering a set of prepared questions.She said, “I have so many things I want to say thatare stirring in my soul.”

StoryCorps’ facilitator Jonah Engle described thestories as, “one of a kind, rich and rewarding. I amglad I was here to record them. They opened upanother view of life for me.” Engle thanked GCDD formaking the special effort to ensure people withdisabilities were represented.

Lisa Janicki, of StoryCorps headquarters, said,“Partnering with GCDDhas allowed StoryCorpsto celebrate and honorstories from acommunity of greatstrength and spiritthat has unfortunatelybeen historicallyunder-represented. Wethank the GCDD forintroducing us to thetruly inspiringindividuals whoparticipated.” l

AMARI & ANIL LEWIS

People With Disabilities Go On Record

To Make History

ALAN DUVALL & CHARLES HOPKINS

KATE GAINER

“I have so many things I want to say that are stirring in my soul.”

MIA & PAT NOBBIEGAIL BOTTOMS

Photos by Julius Suber

By Valerie Meadows Suber

www.gcdd.org 7

AROUND GCDD

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], 404-657-2122Fax 404-657-2132

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

Audio or Large Print Versions:For an audio version of Making aDifference, please contact GCDD. A large 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

GCDD Welcomes New Team Members

The Governor’s Council on Developmental Disabilities is pleased to introducethe two newest members of its staff:

DEE SPEARMAN: As GCDD’s new publicinformation assistant, Dee Spearman will provideadministrative and program support in the areas ofcommunication, marketing, promotion and mediarelations. She will coordinate public forums andmedia roundtables, produce and disseminateinformation materials and assist the publicinformation director with publishing duties forMaking A Difference magazine, planning andexecution of the Making A Difference DiscoveryDay Tour and monitoring GCDD’s organizationalmessage and response to issues. Spearman workedpreviously as an administrator for learning support

and academic affairs at a local college. She has assisted with the development anddesign of promotional materials for a marketing firm, served as office manager fora radio broadcasting group and planned special events for the Rock and Roll Hallof Fame and Museum in Ohio. Spearman can be reached by calling (404) 657-2121or through email at [email protected].

SUSANNA MITCHELL: Susanna Mitchelljoins GCDD as the new program associate. She willprovide program support to the advocacy directorand the individual and family support director.Mitchell previously worked as an advocate forhomeless individuals and families at a nonprofitagency in Atlanta. Mitchell has a real interest inhousing issues and is leading the strategicplanning work group on Real Homes. She willalso take on duties of the partnership fund,planning for Disability Day 2007 and assist withthe production of Moving Forward newsletter.She can be contacted at (404) 656-6593 orthrough email at [email protected].

Gov. Perdue Appoints GCDD MembersGov. Sonny Perdue (R) reappointed Lenora Maynard and appointed Julia

Bowen to the Governor’s Council on Developmental Disabilities March 20.Bowen has previously served as an ex-officio member of GCDD.“We look forward to continue working with these respected members of the

disability community,” announced GCDD Executive Director Eric Jacobson.

G OV E R N O R ’ S COUNCIL ONDEVELOPMENTALDISABILITIES

FY 2006-8 Making a Difference • Spring 2006

The Deficit Reduction Act of 2005,recently signed into law by President GeorgeW. Bush, includes Medicaid programs forpeople with disabilities that will receive newfunding over the next few years.

“The statistics we have indicate theseprograms will receive. . .$11.808 billion infunding over the next 10 years,” explainedbill sponsor Rep. Nathan Deal (R-Ga.).

The Medicaid Reform Bill includes fourprograms designed to improve the lives ofpeople with disabilities:

FAMILY OPPORTUNITY ACT This act allowsfamilies who have children with disabilitiesand are earning up to 300% more than thepoverty level to qualify for Medicaidprograms. Often, these families arestruggling because of the extraordinaryexpense for their children’s care, according toDeal. $6.856 billion over the next 10 years.

MONEY FOLLOWS THE PERSON “This isdesigned to keep people out of insti-tutions,” Deal said. This legislation allowsgrants to be made to states on a federalmatch basis to improve access to home andcommunity-based services.

Under the initiative, the first year a per-son moves into the community, the federalgovernment will cover a higher percent of thecost of their services and states will pay asmaller portion. After the first year, thematch rate will return to the regular rate.$1.975 billion over the next 10 years.

EXPANDED ACCESS TO HOME ANDCOMMUNITY-BASED SERVICES “This is myprimary focus,” Deal said. He explained heknew of many situations where people couldhave avoided going to nursing homes orinstitutions, had community services beenavailable.

In this legislation, states will no longerhave to get a waiver to pay for theseservices; it will be built into Medicaid thatthey can offer home and community-basedservices as an alternative to institutions.$2.615 billion over the next 10 years.

CASH AND COUNSELING This program willuse the self-directed care model and allowrecipients to have control over who they hireand what services they use. “This willovercome the institutional biases built intoMedicaid,” Deal revealed. $360 million overthe next 10 years.

While the Deficit Reduction Act wasdesigned to save $40 billion over the nextfive years, these programs all representedspending increases. “In the long term, theseadditional expenditures could generateservices that are more cost effective thaninstitutional care,” Deal concluded.

Atlanta Hosts Low Vision Project

The Centers for Medicare and MedicaidServices and the U.S. Department of Healthand Human Services have selected Atlanta asone of six locations across the nation toparticipate in a national low visionrehabilitation services demonstration project.Beginning April 1, 2006, the project willstudy the impact of standardized Medicarecoverage for vision rehabilitation services forthose with a diagnosis of moderate to severevisual impairment that cannot be corrected.

The demonstration project will providefor Medicare-reimbursed vision rehabilitationservices from certified specialists who canteach effective ways to enhance remainingvision for completing everyday tasks. As aresult, people with vision loss will be able tofunction more independently and safely athome and in the community, therebyreducing their individual health care anddependency costs.

For additional information about thenational Medicare project, call 404-875-9011and ask for Medicare information. l

Medicaid Increases Disability Spending

NEWS & EVENTS

FY 2006-www.gcdd.org 9

T his session has been a very successfuland rewarding one for advocatesworking on behalf of individuals withdevelopmental disabilities. Many solidrelationships were built with

legislators in key positions, and advocates lookforward to resuming the work during the summerand following the general election in November.This is the end of a two-year session; anythingthat didn’t get passed this session is dead.

The most significant accomplishments were inthe budget. The Unlock the Waiting Lists!Campaign worked very hard with legislators onthe intent of the multi-year funding plan tosustain a long-term effort to reduce the waitinglists. Gov. Sonny Perdue funded 750 services inthe Mental Retardation Waiver Program (MRWP) inhis recommendations, but did not include anyslots for the Independent Care Waiver Program(ICWP). Through meetings, testimony andtargeted visits from individuals utilizing orwaiting for services, Unlock succeeded gettingthe MRWP allocation increased to 1,500 services

funded for six months, and getting 152 slotsfunded for the ICWP program. The MRWPallocation included funding to build communitycapacity through extraordinary rates, person-centered planning, home startup costs forindividuals moving out of institutions andenhanced funding for support coordination.Legislators understood the necessity of fundinginfrastructure to enable the Department of HumanResources (DHR) to implement the servicessuccessfully. The 152 ICWP slots will nearlyeliminate the known waiting list for thatprogram. These two items were huge wins for the

campaign, and for Georgians waiting for services.Another significant achievement was the action

on the Katie Beckett waiver program.Legislators responded to the groundswell ofconcern expressed by parents by putting $7.6million in the FY 06 budget to be used in thelast quarter of this year, and included languagein the FY 2007 budget to ensure continuance.The funds constitute a one time allocation ofstate dollars to provide services for familieswho no longer meet the eligibility requirementsfor Medicaid through the Katie Beckett waiver,and who will also not qualify for any othergovernment-funded services. DHR wasauthorized to contract with a fiscalintermediary to distribute the funds in theremainder of 2006 fiscal year, and to establisha foundation with fundraising capability toensure the sustainability of the funds for thefuture. Many details remain to be worked out,but there is hope that parents who are nolonger eligible for Medicaid will have an option tohelp them care for the significant needs of theirchildren at home.

This year, the Governor’s Council onDevelopmental Disabilities (GCDD) structured thelegislative agenda in tiers, reflecting its prioritiesand the course of action to be taken on eachitem. Following is a review of each item in theoriginal agenda, and a report on its status.

Tier I: Initiate: GCDD is lead agency

• Amendments to the Election Code:Representative Sue Burmeister (R-Augusta)sponsored HB 1435 which incorporated most ofthe changes the advocates wanted. BeginningJanuary 1, 2007, people with disabilities willno longer have to sign an oath specifying thenature of their disability to receive assistanceat a polling place. The person assisting themwill merely have to sign the voter’s certificatestating that they assisted the voter – thiscreates a record that could be used to verifyfraud. There is no longer a separate oathrequirement for individuals with visualimpairments. An individual’s personal assistantcan now deliver an absentee ballot for a person

LEGISLATIVE UPDATE

Disability Advocates, Legislators Forge Relationships

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

“The Unlock the Waiting Lists!Campaign worked very hardwith legislators on the intentof the multi-year funding planto sustain a long-term effort to reduce the waiting lists.”

Photos by Beth Tumlin

Sen. Eric Johnson (R-Savannah) serves as

president pro tempore of the Georgia Senate andshowed his support on

Disability Day.

FY 200710 Making a Difference • Spring 2006

with a disability without penalty. HB 1435 ison its way to the governor for signature. Thegovernor has 30 days to sign any legislation.

• Money Follows the Person legislation:Conversations were held with legislators anddrafts of possible resolutions were circulated,but the coalition determined the effort neededto be refocused, and potentially combined withbudget rebalancing efforts between hospitalsand community funding.

Tier II: Actively Support:GCDD testifies, disseminates information, speakswith legislators about the issue• HB 898: E-Text Legislation: This would require

publishers to provide electronic versions oftexts to post-secondary students with a printaccess disability. The Chair of the HouseCommittee on Higher Education was reluctantto call a committee meeting on the bill withoutconsensus among advocates, the Board ofRegents and the publishers. The position of thepublishers appears to be the primary stickingpoint. Discussions will continue, and legislationwill be reintroduced next year.

• Georgia Qualified Medication Aide Act, SB480: This would allow direct support stafftrained as medication aides to administerroutine medications to individuals inCommunity Living Arrangements in three metroarea counties. The advanced practice nurseprescribing act was attached in the House, andthe bill passed and is on its way to the

governor to be signed.

• Budget Items: Aside from the Unlock itemsdescribed above, other allocations in thebudget included:n Annualization of 925 waiver slots, in the

FY 2006 budget; state: $3,284,597, total funds: $8,302,823.

n 10 ICWP waiver slots in the FY 06 Department of Community Health (DCH) budget: $53,038.

In the FY 2007 budget, to begin July 1, 2006

• 1,500 MRWP waiver services, funded for 6months: $11,589,794. The slots include moving44 children from state institutions, 19 duallydiagnosed adolescents from NW GeorgiaRegional Hospital and 40+ individuals fromAllen Hall at Central State Hospital.

• 152 ICWP waiver slots in the DCH budget; 10slots annualized from the FY 06 budget andfunds for 142 new slots. State: $3,286,957,total: $8,535,333.

• Provide dental coverage for pregnant women;state: $2,500,000, total: $6,491,280.

• Additional funds to DHR to coordinate dentalhygienist programs at accredited dental schoolsto provide services to consumers withdevelopmental disabilities: $50,000.

• Fund accessibility modifications to homes ofpersons with disabilities, through the Depart-ment of Community Affairs (DCA): $300,000.

• Board of Regents budget, support funding forthe Alternative Materials Access Center. Thisfunding was not accomplished through alegislative allocation.

Tier III: GCDD allows use of name, but otherwise no activity.

In this tier, the following items passed: • DHR budget, 1,000 slots for the Community

Care Services Program (CCSP); state:$3,615,330, total: $4,314,375.

• $125,000 for naturally occurring retirementcommunity (NORC).

• Aging and Disability Resource Center: $700,000.

• SB 208, Central Registry for Brain and SpinalCord Injury Trust Fund passed, on to governorfor signature.

LEGISLATIVE UPDATE

“Many solid relationships were builtwith legislators in key positions...“

Lt. Gov. Mark Taylor (D) andGCDD Chair Tom Seegmueller

discuss disability issues.

www.gcdd.org 11

• Restoration of Peachcare Dental Funding thathad been previously reduced (using funds inthe Care Management Organization rates).

• Increase in the personal needs allowance for allnursing home residents, $20 per person, state:$2,288,002.

As Tier IV is a neutral position, and GCDDdidn’t oppose anything (Tier V), there is nothingto report on those areas. However, in the “Itemsto Watch” category, the following occurred:• SB 500, the 2006 Georgia Accuracy in Elections

Act, passed and is on its way to the governorfor signature. The bill requires three precinctsto pilot a paper ballot backup system in thenext election.

• Plans for Medicaid Modernization through an1115 waiver were put on hold indefinitely.

• HB 1223, referring to the duties and powers ofCommunity Service Boards, was passed.

• The administrative services organization (ASO)that serves a gatekeeping function in theMedicaid and DHR budgets, requested proposalsin early April, and ASO functions will beapplied to waiver programs, SOURCE and KatieBeckett populations.

• Finally, the Senate surprised advocates bydoubling the number of waiver slots in theMRWP with this language, “Provide 12 monthsfunding for an additional 1500 slots in theMental Retardation/Developmental Disabilitieswaiting list. This will bring the total number of

slots to 3,000. (Senate: offset $24,147,199state funds with funds previously used to coverthe deficit for state hospitals.) (Conferencecommittee: Reflect community service fundingused in prior years to cover hospital deficits tobe spent on community services only.)” WhileDHR may not be able to implement anadditional 1500 services because no “new”funds were allocated, it has been directed touse funding allocated for community servicesfor community services only, not to cover thedeficits in the state hospital system. Thislanguage will support advocates in the futureas they work toward moving all individuals withdevelopmental disabilities from state hospitalsto the community.

Advocates and their family members can beproud of the work accomplished in this session.Advocates are on firm footing toward achievingthe goals of the multi-year funding plan, andthey thank legislators for their work on disabilityissues. Stay tuned to state legislator races, andlet them know of disability concerns and

interests, and be prepared tocontribute ideas toward the

2007 Legislative Session! l

T he legislative agenda is a moving target, and several issues and

legislation came up that affectconstituents. A few are notedbelow, and the final issue ofMoving Forward, to be sent April6, will report the final summaryof pertinent legislation passed.

Language directing the Department ofCommunity Heath to research and planfor a Medicaid buy-in program was putin the FY 2007 budget.

HR 1401: Remembering Natalie Tumlinand her contributions to the advocacymovement for people with disabilities;recognizing the contributions of directsupport professionals in supportingpeople with disabilities to live, workand participate in their communities.

HB 959: Mallory’s Act: relating toparking permits for persons withdisabilities, and to provide for permitsissued to minors with permanentdisabilities, passed both chambers byMarch 27.

HB 728: Mattie’s Call, to provide for astate-wide alert system for missingadults with disabilities, was passed onMarch 31, after being amended by thesenate to include Kimberly’s call. Thiswould enable law enforcement to usethe “Amber Alert” system to helplocate missing people with disabilities.

HB 695: Disabled Assistants Act,authorizes the issuance of permits foranimals to assist persons withdisabilities under certain conditions,such as service monkeys.

Other Notable Bills:

“DID YOU HEAR US?OUR VOTE COUNTS!”12 Making a Difference • Spring 2006

Natalie Tumlin and 100 of herfellow advocates gathered atthe Georgia Capitol to kick off

the Unlock the Waiting Lists!campaign in 1998. Eight years later,on February 23, 2006, a record-breaking crowd of more than 1,600Georgians with disabilities, theirfamily members, friends, neighborsand support professionals gathered inthe same place for what has becomeknown as Disability Day. They joinedto ask legislators to support initiativesaffecting their quality of life.

The disability community took a few minutes toremember Natalie Tumlin, who died last October. Inhonor of her masterful advocacy efforts, Rep. JudyManning (R-Marietta) sponsored H.R. (HouseResolution) 1401, saluting Tumlin’s contributions tothe disability movement and recognizing the directsupport professionals who help people withdisabilities to live, work and participate in theircommunities. “Rep. Manning knew how importantNatalie’s staff was to her ability to be a mover and ashaker, so we decided to draft a resolution that bothhonored Natalie and recognized the importance ofdirect support professionals to the lives of peoplewith disabilities and their families,” said Governor’sCouncil on Developmental Disabilities (GCDD) DeputyDirector Patricia Nobbie, D.P.A.

GCDD Chairperson Tom Seegmueller welcomedthe swelling crowd in the south wing of the Capitolbuilding, emphasizing the power of voting, thetheme of the 2006 Disability Day. “Imagine the realpower we would have if every person with adisability and their families voted and participatedin their communities,” he said. “Together we’re

strong; we have real power!”Intensifying from a low rumble to a booming

roar, the crowd’s powerful words, “We Vote! Unlockthe Waiting Lists! We Vote!” soon penetrated thewalls of the House and Senate chambers.

Once again, the focus of the eighth annualDisability Day was the request for the House andSenate to increase the number of new MentalRetardation Waiver Program (MRWP) slots. DaveBlanchard, advocacy director for the Atlanta Allianceon Developmental Disabilities, and coordinator ofUnlock the Waiting Lists! explained that there is afive-year funding plan to close the gap between thenumber of people on the waiting list and peoplereceiving waivers. This year, the goal is to fund1,500 more slots for Fiscal Year (FY) 2007. He alsoexplained that if the state doesn’t approve aminimum of an extra 1,100 slots each year, thewaiting list may outpace funding increases.

Rep. Ben Harbin (R-Evans), appropriations Chair, addressed the crowd. “You have given us theopportunity to do what we need to do anyway, withyour support,” he said. “The House will stand firm to approve or increase it.”

Lt. Gov. Mark Taylor (D) discussed the positiveoutcomes for disability advocacy that he haswitnessed in Albany, his hometown. He said, “You’remaking a difference! The waiting lists are shorterthanks to advocacy.”

Advocates asked legislators to approve funding152 more Independent Care Waiver Program (ICWP)slots to the FY 2007 budget so that more Georgianswith disabilities are able to leave institutions andmove into their communities.

Blanchard explained that legislators funded anadditional 10 ICWP slots during the supplementalbudget period for FY 2006, even without a requestfrom advocates. “It’s an important symbol of theirsupport,” he said. The supplemental budget mid-yearadjustment is also made during the legislativesession, separate from appropriations for theupcoming fiscal year.

By Christina Rosell

1,600 Voters RallyFOR A BETTER QUALITY OF LIFE

Rep. Ben Harbin promises hissupport in approving or increasingMRWP slots.

S?OUNTS!” www.gcdd.org 13

During the adjustment, the Senate was alsoresponsible for allocating an additional $3.6 millionfor families who had been denied the Katie Beckett(Deeming) Waiver. The House added an additional$400,000, bringing the total to $4 million (afterfurther discussions, the total was raised to $7.6million). The waiver assists families with childrenwho have long-term chronic medical conditions anddisabilities to receive Medicaid assistance forsupport not covered by typical insurance. “Very fewpeople can understand the financial responsibility ofraising children with special needs. The KatieBeckett Waiver has been a lifeline,” said HeidiMoore, a parent advocate from Alpharetta. “Weshould be grateful to legislators for addressing ourconcerns.”

Advocates marched to the Georgia FreightDepot, where some enjoyed lunch with theirlegislators, and all were encouraged to keepadvocating and get involved in the elections.

Self-advocate Nandi Isaac of Macon talkedabout how unlocking the waiting lists would help

her and many others work and live in thecommunity. “Please unlock the waiting lists for thestate, for the U.S.,” she said.

Terry Langley of McDonough discussed theimportance of the Children’s Freedom Initiative, H.R.633, sponsored by Rep. Manning. “No child belongsin an institution with a paid staff,” she said. If theFY 2007 item is passed, it will allow more than 40kids to move out of institutions and into thecommunity by June of 2007.

“The way that happens is to make sure there isplenty of community support,” commented EricJacobson, GCDD executive director. The initiativealso calls for pay increases for direct supportprofessionals in the community.

Speaker of the House Rep. Glenn Richardson (R-Hiram), Sen. Eric Johnson, Senate President

Pro Tempore (R-Savannah), and Rep. Jeff Brown (R-LaGrange), chair of the subcommittee onAppropriations for Health and Human Services maderemarks supportive of the disability community. “Weactively support your issues,” Brown said.

Other legislators spotted with their constituentsamong the crowd were Rep. Jay Neal (R-LaFayette),Rep. Steve Tumlin (R-Marietta), Rep. Carl Von Epps(D-LaGrange), Rep. Clay Cox (R-Lilburn), Rep. TommySmith (R-Nicholls), Rep. Jane Kidd (D-Athens), Sen.Vincent Fort (D-Atlanta), Sen. David Adelman (D-Decatur), Sen. Dan Moody (R-Alpharetta) and Sen.Michael Meyer von Bremen (D-Albany).

More than 1,600 advocates can be sure theywere heard loud and clear at Disability Day. Sportingbright red t-shirts that asserted, “Our Votes Make ADifference,” they were hard to miss. Until thesession is closed and the budget is finalized, theyare continuing heavy advocacy efforts, encouraginglegislators to approve or improve the budget, andmake a difference. And they hope Georgia’s senatorsand representatives’ ears are still ringing from thechants, remembering the real people who want reallives in red t-shirts declaring, “Did You Hear Us? OurVote Counts!” l

First “Self-Advocateof the Year”

Shepherd Center Director of AdvocacyMark Johnson, of Alpharetta, was the

named the 2006 Georgia Self-Advocate ofthe Year at Disability Day. An advocate forpeople with disabilities for over 30 years,Johnson has a reputation as a leader andpioneer of the modern day disabilitymovement, and is the first to be honoredwith this award.

Fellow advocate Beth Tumlin presented the honor, establishedin loving memory of Natalie Norwood Tumlin, her daughter, and theself-advocate who was the driving force behind Unlock the WaitingLists! “The first recipient is always there when advocacy is needed,”she said. “He is a role model for self-advocates – he’s taught peoplehow to effect change in their own lives.”

An emotional Johnsonaccepted the inaugural award fromTumlin and Governor’s Council onDevelopmental DisabilitiesExecutive Director Eric Jacobsonsaying, “This is really special.” He concluded his acceptance byleading the crowd in a wall-shaking chant about Money Follows thePerson (MFP) legislation. “I’ve learned you’ve got to make noise ifyou want something,” he said.

“I’ve learned you’vegot to make noise ifyou want something.”

“No child belongs in an institutionwith a paid staff.”


A fter the rally at the Capitol and lunchwith legislators during Disability Day2006, a focus group was facilitated byDottie Adams, Governor’s Council onDevelopmental Disabilities family and

individual support director, to discuss disabilityissues to bring to the attention of candidates duringthe 2006 elections. Participants discussed topicsaffecting the lives of people with disabilities andthe people who support them.

George Bell and Mike Jackson of Commerce feltcandidates in their districts should assist peoplewith disabilities to become employed. Bell said hewould want them to support “start up money forpeople to have their own businesses, customizedemployment, supported employment and incentives”(for companies that hire people with disabilities).“We need to revamp the service system so that thereare opportunities for all people to go to work,regardless of their disability,” Jackson agreed.

Many in the focus groupagreed that a candidateshould be supportive ofpeople moving out ofinstitutions and into thecommunity, and shouldsupport community-basedwaivers and Money Followsthe Person (MFP)legislation, to get theirvotes. “We should increasefunding to all home andcommunity-based waiversand decrease the dollarsthat go to fund institutionsand nursing homes,” saidRenita Bundrage of Decatur.

“It should not take years to be able to getaffordable, accessible housing,” said Susan Edwardsof Alpharetta. She has been on a waiting list for anapartment for 1 1/2 years because it is hard to findavailable wheelchair accessible apartments.

“Why are services good in Atlanta but not inthe rest of the state?” is a question Tim McClention

of Gwinnett said he would have for legislativecandidates.

Parent advocate Greer Anderson of StoneMountain said, “We want broader options and choicein who delivers services.” She often spends moremoney on approved services than she would if shewas permitted to buy unauthorized products orservices directly.

Barbara McRae of Atlanta would like herlegislators to support funding for family supportwhile on the waiting list instead of supportcoordination services.

Participants said they would also educatecandidates on aging and disability resource centers,problems with discontinued service hours and theneed for services like Meals on Wheels for peoplewhose direct support professionals get sick and can’tprovide services for short periods of time. “Agingand disability is a growing issue,” said Lana Hardy,assistant executive director at the Atlanta Allianceon Developmental Disabilities (AADD).

Karen Carter, M.D., at the Department ofPediatrics at the Medical College of Georgia said,“The process to determine what accommodationsand adaptations are needed for a child should bedone in a timely manner.” Joy Norman of Columbusfelt publishers should be required to provide textsfor students in alternative formats.

Cheryl Rhodes focused on what happens tostudents when they leave high school. “There needsto be funding available so that parents don’t haveto quit work or have the student just go home towatch television,” she said. “Programs need to becommunity-based and should enhance the person’squality of life by helping them get better connectedinto the community.”

David Hardy said candidates should supporthigher education for people with disabilities byeliminating testing requirements and by fundingaccommodations. However, to become available forhigher education, the special education diplomawould also need to be modified.

Jeremy Sloan of Macon discussed the need tobuild provider capacity in Georgia, and help people

Looking Towards the 2006 Election

George Bell, Renita Bundrage,and other disability advocatesdiscussed accessible housing,real jobs and becominglegislators themselves.

Lana Hardy discusses the need for moreresources for aging and disabilities.

2 0 0 6 PA R T I C I PA N T SJeremy Sloan – Macon

Michael Turner – Athens

George Bell – Commerce

Joy Norman – Columbus

Greer Anderson – Stone Mountain

Barbara McRae – Atlanta

David Hardy – Atlanta

Renita Bundrage – Decatur

Lana Hardy – Atlanta

Susan Edwards – Alpharetta

Tim McClention – Gwinnett Co.

Liliana Garcia – Dunwoody

Dr. Karen Carter – Augusta

Cher Forman – Alpharetta

Mike Jackson – Commerce

Cheryl Rhodes – Atlanta

Kevin Carter – Augusta

FEATURE

www.gcdd.org 15

Advocacy Begins

With You!On the morning of Disability Day, Governor’s Council on

Developmental Disabilities Deputy Director Patricia Nobbie,D.P.A., held an advocacy training class on how to educatelegislators in a meaningful way. Self-advocates gathered at theCapitol Education Center and received a legislative overview and tipson communicating with senators and legislators from an expertadvocate who spends most of her time at the Capitol.

“Legislators know very little about a wholelot – if you want them to know something,you need to educate them,” she said.

She explained that during the session,senators and representatives work hard on thefiscal year budget for the upcoming year andthe supplemental budget for the current fiscalyear. Thus, long-term communication is morebeneficial than trying to contact them oncethey are already in session.

“Successful advocacy is a year-roundprocess,” Nobbie explained. “Legislators wantto know what you think, and they are veryapproachable.”

Nobbie gave the following tips on how toeffect change and educate the state’s decisionmakers:

• Find out what other states are doing about the issue.

• Know the opposition’s platform.

• Communicate with the legislators in your district – they focus on constituents first, lobbyists second.

• Form relationships with your legislators and their assistantsoutside the legislative session.

• Discover legislators’ preferred modes of communications (email, snail mail, telephone, etc.).

• Write “constituent” at the top of your letters or othercommunications.

• Tell legislators your story – keep it to one page or under 500 words.

• If advocating with an organization, always relay the same message.

• Speak the truth – if you don’t know the answer to a legislator’s question, it’s okay to get back to him or her.

• Find out about legislators’ personal lives – it’s a good icebreaker to talk about the last football game their team played.

• Invite your legislator to community events or meetings of your organization.

• Don’t be afraid to ask questions.

Nobbie encouraged advocates to try to talk to their legislators that day, but to make sure to continue the relationship over time.“The real influence begins with you,” she said. l

with disabilities maintain good personal careattendants by allocating more dollars in services andhigher rates for waiver services. “I lost a lot of goodattendants because they go elsewhere for moneyand medical benefits,” he said. Cher Forman, adirect support professional in Alpharetta, agreed.“We need to equalize the pay for direct supportprofessionals who work in the community with thosewho work in state institutions,” she said.

Sloan also said his candidates should want tohelp improve transportation systems in Georgia, withbetter buses and more routes. Sloan said often noneof the buses he waits for have functioning lifts.

Many in the group expressed a need for a moreaccessible and supportive health care system. Sloanand David Hardy said Medicaid and Medicare don’talways cover prescription medications that areneeded, and Carter said the process for obtaininghealth care resources should be simplified.

Liliana Garcia, Spanish statewide projectcoordinator of Parent to Parent of Georgia said thatMedicaid is being taken away from Hispanic/Latinochildren who are U.S. citizens by birth because somefamily members are illegal immigrants. She said thechildren should be treated as U.S. and Georgiacitizens, regardless of their parents’ legal status.

David Hardy shared concerns that the currentlegal system penalizes people by removing certainbenefits when they are married. “This isdiscrimination, and the rules should be changed sothat the benefits are based on the needs of theindividual, and not on their marital status,” he said.

Michael Turner said he would talk to candidatesabout the law enforcement and justice systems, andthe need to look at more creative sentencing andappropriate services and supports for people withdisabilities so they are not mistreated and abused inthe criminal justice system.

Lastly, Bundrage said she would need to beconvinced that her legislative candidates arechampions for disability issues. She said if elected,the candidate should be willing to call upon her foradvice when a disability issue arises. l

“We need to equalize the pay fordirect support professionals whowork in the community with thosewho work in state institutions.”

Patricia Nobbie D.P.A. explainedthat waiting list slots that are ap-proved in the budget become partof base funding next year. “We arereally advocating for new money.”


My Life with a Direct Support ProfessionalBy Andreena Patton

A fter becoming a quadriplegic froman automobile accident 11 yearsago, my life changed drastically.One of the most difficultchallenges was being dependent on

someone else for activities of daily living (ADLs)like; bathing, dressing, transferring and cooking.At first, my family assisted me with ADLs but itbecame increasingly overwhelming as everyonebegan returning to work. As a family, we realizedwe needed help. As an individual, I realized Iwanted to be more independent.

A new world opened up that I never knewexisted. It was the world of attendant care. I wasvery nervous and did not like the idea of astranger coming into my bedroom and assistingme with my personal care. However, deciding touse attendant care was the best decision I madetowards becoming more independent. When myfamily assisted me, I would have to do thingsaround their schedules. For example, I would haveto get up when my mother could get me up or goto bed when she could assist me. In a sense,attendant care gave me my independence back.

Independence is very important to everybody,especially to someone who loses it. Attendantcare allowed me the independence to make myown decisions on how my schedule worked bydeciding when I wanted to get up or go to bed,

eat, get dressed and take a shower. It enabled me to go to college, graduate school, obtain ajob, maintain a social life, spend quality timewith my family and most importantly live in myown apartment.

While using attendant care has permitted meto accomplish many things, it has been a taxingprocess to work with an attendant care agency,find compatible attendants and keep good qualitypeople. One of the first questions I ask an agencythat I am interviewing is, “Can I hire my ownattendants?” To me working with agencyattendants is a headache because I may get fouror five different attendants in a week that I haveto train each time. Whereas, when I find andhire an attendant, they work with only me, and Ican train them once about my specific needs. Ido try to hire attendants that have been certifiedunder the Certified Nursing Assistant program, butI do not necessarily expect that as a requirement.It is important for me to be a major part in hiringmy attendant due to the fact that I am with thisperson every day, all day and to foster a positiverelationship, I want to have a say as to whocomes into my home.

Attendants become more than attendants,they become family. I have had the sameattendant for eight years, and I am as much apart of her family as she is mine. I go to herchildren’s parties, sports events, school plays andshe attends my family events. We have a closerelationship and have developed a friendship.Without her and my other attendants, I would notbe able to get out of bed, be a contributingmember of society or have a meaningfulindependent life. l

Andreena Patton worksas a peer supporter atDisability Connections, acenter for independentliving in Macon. Shegraduated from MercerUniversity with a B.A. inearly childhood educationand program andleadership services andobtained a M.S. inrehabilitation counselingand case management atFort Valley StateUniversity. She isinvolved with the GeorgiaPeer Support Project,Unlock the Waiting Lists!and the Brain and SpinalCord Trust Fund Summit.She serves on the GAIndependence PlusInitiative Stakeholder'scommittee.

“Deciding to use attendant care wasthe best decision I made towardsbecoming more independent.”

www.gcdd.org 17

Direct Support Professionals

and Their Clients Enrich Each Others’ Lives

My Life as a Direct Support ProfessionalBy Alice Tiner

Alice Tiner has workedfor AdvantageBehavioral HealthcareSystems in Athens forthe past four years as acommunity resourcecoordinator and a socialservice coordinator.After growing up inOconee county, sheattended AthensTechnical College andthe University ofMobile. She is marriedand has one child.

F our years ago, when I was working withAthens Shuttle, I was introduced toseveral people with developmentaldisabilities. Previous to this position, Ihad never had the opportunity to build

any form of relationship with anyone with adevelopmental disability. As my involvementincreased, I decided that I was very interested inworking more closely with people withdevelopmental disabilities. I contacted the agencywe served and applied for a position.

When I first started in this profession, I neverrealized the impact it would have on my life. My lifehas been enriched by helping the people I supportand realizing the importance of assisting them toachieve a life as good as my own. I have found inthis field that the public is very uneducated on howto relate to individuals with disabilities. Many times,I have been out in the community with one or more consumers and people will address me withquestions that are intended for the consumer(s). Myresponse is, “Why don’t you ask them?” Most peoplewith developmental disabilities are overlooked,devalued and do not get to make their own choicesin life, even about where they live and with whom.I believe it is extremely important for me toadvocate on the behalf of the people I support.Someone has to be their voice so changes can occur.

To expand my knowledge and the capabilities Ican provide to the people I serve, I am taking theDirect Support Professional Certification Program.

During the course, our assignment was tochoose a learning partner. The person I chose wasJuanita, and she has no family, only paid support.This can make for a very lonely holiday season. OnThanksgiving Day, I invited Juanita to spend theday with my family. When we arrived at mygrandmother’s house, she was greeted with a warmwelcome. I introduced her as my friend, Juanita. Aswonderful as my family may be, I found out justhow uneducated they still are. I was fixing a platefor myself and someone whispered to me, “Can shetalk?” I just laughed and said “Why don’t you askher?” Then I realized that as much as I hadadvocated for people with developmentaldisabilities, I had not even made an impact on myown family! As the day passed, we watched thechildren run and play. We talked and laughed as weshared a part of our lives with Juanita all the whileshe opened up and shared her life with us. Thatevening as I was taking Juanita home, she reachedover and said, “You know Alice, I love you.” A tearfell down my face as my heart smiled. I had beenable to give just a little of my time to helpsomeone’s life be more meaningful, if only for amoment. I knew then that my job is to educateanyone who will listen, and if they don’t choose tolisten, continue until they do.

The experiences I have encountered led me tobecome an active member of the Georgia Alliance ofDirect Support Professionals. As a direct supportprofessional, I have witnessed a lack of support andrecognition in this profession by the general public.Many consider us as just caretakers, attendants andeven “warm bodies.” We are much more than this!We are mentors, advocates, community builders andperson-centered planners. We strive to make adifference in the lives of the people we serve. TheGeorgia Alliance strives to raise communityawareness, and that is why I became a part of thisorganization. l

“My life has been enriched byhelping the people I support andrealizing the importance ofassisting them to achieve a life as good as my own.”


The rallying cry of thedirect support professionalclass at Athens TechnicalCollege was, “If it doesn’t

work, try it another way.” This isexactly what the Governor’sCouncil on DevelopmentalDisabilities (GCDD) did when itdecided to tackle the lack oftraining options available for directsupport professionals (DSP).

Lynnette Bragg, GCDD council member andformer chairperson, explained, “We wondered howto give people the support they need so theyreally support people with disabilities, instead ofjust doing tasks. The training program evolvedfrom conversations we had about what role wecould play in facilitating this education.”

So GCDD embarked on a fact-finding mission,traversing the state to talk to DSPs and theirclients to determine their needs, as well asinterviewing people across the country aboutprograms in other states.

Joy Eason Hopkins, president of CollectiveAlternatives, Inc., helped develop the curriculum

for what hasbecome Georgia’sDirect SupportProfessionalCertificateProgram. “Before,training variedfrom provider toprovider. Someservice providers

had training coordinators, others had no-one. Notraining was standardized. It was just left up tothe providers to do what they could.

“With budget cuts in services, that’sunderstandable – training is usually the first toget cut,” she explained.

“With more people moving out of hospitalsinto community life, direct support staff whohave been supporting people in facility-basedprograms now must offer support in thecommunity. It may seem like a natural thing todo, but it requires a lot of skill, and we weren’tacknowledging that,” Eason Hopkins said.

Bragg explained that the training wouldemphasize building relationships to help peoplewith disabilities feel more comfortable receivinghelp with intimate tasks, such as bathing. “It’shumbling to say, ‘I need help with tasks I wouldnormally do myself,’ ” she said.

Next GCDD looked for a forum in which tooffer the certificate course and determinedpartnering with the Department of Technical andAdult Education (DTAE) would be the best avenue.

“(DTAE) is a community resource – not justin the field of disabilities. The Hope Grant isavailable to students, and like the HopeScholarship, can be used to pay tuition,” EasonHopkins explained.

The six-month program, which included two

Need forDirect Support Training

GCDD Responds toBy Valerie Smith Buxton

“We wondered how to give people the support they need so they reallysupport people with disabilities,instead of just doing tasks.”

Lori McGee and her learning partner, Rocky Hunt, enjoy their timetogether during Disability Day at the Capitol.

courses, was rolled out in September 2004 atNorth Georgia Technical College, Central GeorgiaTechnical College and East Central TechnicalCollege, and in 2005, the program has been

attended by students at Athens Technical Collegeand Central Georgia Technical College’sMilledgeville campus. Eason Hopkins hopes tofurther expand into Savannah Technical College,Lanier Technical College, and eventually somemetro-Atlanta technical colleges.

The first course consists of 50 hours of classtime and 60 hours of practical experience. Thecompetencies students are expected to learn inthe first session include the changing role ofsupport; systematic instruction; discoveryprocess; individual accomplishments; person-centered thinking, planning, action; communityexploration; representation; family support;personal assistance; social capital/socialnetworks.

In the second course, the practicalexperience hours are increased to 90, whileclassroom hours remain at 50. Competencieslearned in the second half of the program includesystematic instruction in natural settings;motivation, encouragement and challengingbehavior; rights, safeguards, confidentiality anddocumentation; personal wellness; medications;conduct and expectations; learning organizations;and Georgia’s services system.

While the course is comprised of 100 hoursof classroom learning, the real emphasis of theprogram is on the practical experience. “Students

are paired with a learning partner. Each studentmaintains a portfolio of projects and productsthey work on with their learning partner,” EasonHopkins explained.

Learning partners are people with disabilitieswho already utilize the services of a directsupport professional. Depending on thecircumstances, sometimes students choose alearning partner who they already know and workwith, or the teacher may assign a new learningpartner to a student.

“So far, it’s worked both ways,” EasonHopkins said.

Linda Hazinski of Advantage Behavior HealthSystems in Athens taught this year’s class atAthens Technical College. “The students learn howto listen to their focus person as well as how toadvocate for them. We’ve seen them really growin that way.”

The course emphasizes the importance ofperson-centered planning. “I think they get thewhole philosophy of providing person-centeredplanning services to people, and how to train orsupport people inthe community, aswell as how toconnect people tothe community,”Hazinski said.

“The peoplewe serve don’talways havechoices,” explainedgraduate CrystalBrown, ofUnlimited Servicesin Monroe, Ga. “Wehave to be thesepeople’s voices. Wehave to speak forthem or else no-one will, or weneed to teach them

www.gcdd.org 19

Barbara Reed and GeorgeBell celebrate Reed’s

graduation in Athens.

“We have to be these people’svoices. We have to speak forthem or else no-one will, or we need to teach them to speakfor themselves.”

to speak for themselves.”Students are encouraged to help their

learning partners obtain new skills. “We put a lotof emphasis on where learning happens – itshould happen in the community. There should bean emphasis on relationships and supporting andcreating networks of support in more than oneplace in the community,” Eason Hopkins said.

As part of thecourse, studentsmust really get toknow their learningpartners and helpthem identify andfulfill one of theirdreams. “The studenthas to determine

with their learning partner what to work on. Ithas to be something they can’t just dothemselves. It has to be something that requiresparticipation and involvement from other people;therefore bringing in a network of support,”Eason Hopkins said.

In the Athens class, for example, Hazinskisaid one student is helping her learning partnerreconnect with her family.

George Bell, one of the learning partners inthe Athens class, was teamed with Barbara Reedof Jackson Creative Community Services inCommerce, Ga., who helped him work on hisdream.

“I’m more quiet. I learned to open up a bitand be more vocal. I never experienced anything

like this. We learned a lot about each other,” he said.

New graduate Jackie Johnson, of GroIndustries in Greensboro, Ga., said, “We’relearning what our clients’ dreams really are andhelping to make them happen. We’ve got a newspirit about us.”

The course is structured so the instructorsaren’t simply lecturing during class time. “Classtime is spent on discussing what the studentshave experienced in their practicum projects,”Eason Hopkins said.

“One of the beauties of this program is thatthe learning partners aren’t limited to anypopulation of people. They could be people withdevelopmental disabilities, mental illness or thosewho are aging. I like that a lot because there are16 students in a class and 16 different learningpartners with 16 different stories and lifecircumstances,” Eason Hopkins explained.

Rep. Nathan Deal (R-Ga.), who has agingparents, said he has had a difficult time findingsupport staff to assist his parents. “They can’tafford home health care,” he said.

He appreciates the new course because itwill produce trained professionals at a morereasonable rate. “It provides a valuable serviceand a good job opportunity for thoseindividuals,” he said, and he is looking for waysthe federal government can help support thedevelopment of direct support professionals.

The course is structured

FEATURE

“We’re learning what our clients’dreams really are and helping tomake them happen. We’ve got anew spirit about us.”

20 Making a Difference • Spring 200620 Making a Difference • Spring 2006

to give back to the learningpartner. “We couldn’t do itwithout the learning partner –they should get somethingout of it. The learning partnergets a life profile forthemselves, a writtendocument that the studentand learning partner complete together,” EasonHopkins said.

Learning partners can use this life profile totake to planning meetings to help determinesupports. Because the class emphasizescommunity supports, the learning partner also isable to participate in more community activitiesas part of the course.

Both Eason Hopkins and Hazinski havenoticed the students who complete the coursefeel more self-confident. “In the first class, a DSPsaid she learned about the medications herlearning partner was on and how they wereaffecting her. She took her learning partner tothe doctor and challenged the doctor on themedications. She said she never would have feltstrong enough to challenge the doctor before thisclass,” Eason Hopkins said.

Hazinski said she has heard comments fromother service providers on how the program isaffecting their staff. “Someone from anotheragency noticed how a student speaks out morefor programming and community supports for herclient.”

While there currently are no classes in herarea, GCDD’s Lynnette Bragg, who is also a serviceprovider, said, “I’m very interested in encouragingour staff to go through the training.

“My son has significant disabilities. He needshelp bathing and eating. His relationship with hisdirect support professional is the most importantin his life. Matching him with someone whorespects him is vital.

“It’s a great time in Georgia that we’rerecognizing how valuable these professionals are.They let people with developmental disabilitieslive life to the fullest,” Bragg declared. l

Bright Outlook For Direct SupportGraduate by Christina Rosell

A t her graduation on March 14, direct support professionalLinda Leopard marched forward with enthusiasm and

practical knowledge from her expert professors. The ceremony marked the end of a six-month certification

class for direct support professionals (DSPs) and the beginningof positive change – for DSPs, and the people they support.

“Not only did I gain friendship, but I will be able to use thisclass in what I do every day,” she said.

At the beginning of the class, Leopard and her fellowstudents were asked to choose a “learning partner,” and Leoparddecided to work with Harry Thornton, a 53-year-old man whohad been on her caseload at the day habilitation center whereshe had previously worked.

“He and I have traveled a journey together,” she said,thinking back on her assignments and portfolio she worked withThornton to assemble.

Throughout her time spent in the classroom, she learnedabout person-centered planning and mapping; behaviors andwhat they really mean;and many other topicsfrom industry experts.Then, she had to put herknowledge to practice withThornton, and assemble aportfolio on everythingthey discussed. At the endof the class, Leopard and her classmates handed over theirportfolios to their learning partners. “It will be beneficial tohim,” she said.

“I enjoyed working with her in this class,” Thornton said atLeopard’s graduation. “She helped me do a lot of things.”

Leopard found the class to be so beneficial, she thinks itshould be a requirement to work as a direct support professional,and hopes there will be more in-depth classes for graduates inthe future.

And the future is already looking brighter for one of the firstDirect Support Professional Certificate holders. Leopard waspromoted to Community Resource Coordinator One on April 1,2006.

“It means a lot,” she said. “Not because you’re getting anyrewards, but because I love what I do.” l

“Not only did I gainfriendship, but I will beable to use this class inwhat I do every day.”

Linda Leopard and Harry Thornton learned more about each other during the six-month class.

www.gcdd.org 21

Graduates of the Athens class marked their achievement with aceremony that included their learning partners.


FEATURE

D irect support professionals (DSPs)across Georgia have joined forces tostand up for their rights – and therights of the people they serve. ThirtyDSPs founded the Georgia Alliance of

Direct Support Professionals (GADSP) at the TimberRidge Conference Center in Mableton last May, anddrafted a three-part mission statement:

1. Promote recognition of DSPs.2. Promote freedom of supported people through

person-centered direct support training.3. Advocate for a living wage and benefits for

DSPs, and the people they support.According to Bruce Blaney, GADSP project

director, the alliance’s work includes helping“reorganize” provider agencies. He explained thatagencies are typically managed in a hierarchalstructure, with DSPs at the bottom. They don’t oftenmake decisions about the people they serve daily,but simply carry out orders from the top.

“We don’t think that works very well becausedirect supportprofessionals know thepeople they work withthe best, and thepeople assigning tasks

aren’t spending 40 hours a week with the peoplesupported,” he said.

In a person-centered team structure however,Blaney said the DSPs take a more active role in thelife planning of the people they support, and clientservice becomes more effective.

Lisa Robinson, GADSP chair and job coach atSupported EmploymentSpecialists, explained howraising DSP wages benefitsconsumers, too. “Usually there isa turnover rate because the payis low,” she said. “Clients can’thave a relationship if there isconstant change. That’s reallywhy the living wage is needed.”

Blaney maintained thatthere is a drastic differencebetween the wages of a DSP inthe public sector, an institution

and in theprivate sector.Essentially, the statesubcontractsprivate supportproviders in the community, and mandates thesalary of the DSPs they employ. Therefore, theindividual providers have little control over thewages of their employees, and need the state toaward higher rates that directly benefit the DSPs.

The first piece of legislation that GADSP issupporting is the Children’s Freedom Initiative. Theresolution calls for the transition of children fromstate institutions into homes with families. Theywould still need direct support in the community.

The resolution also requests pay increases fordirect support professionals working for providers inthe community. Without a pay increase, DSPstransitioning from an institution into thecommunity would not be compensated as in theinstitution, forcing many to change professions, ortake second jobs to counteract extreme pay cuts.

Johnnie Boddie, a GADSP Steering Committeemember, is working hard on recruiting direct supportprofessionals across the state to join the alliance.“This is for everybody; this is to make it better forall direct support people,” she said.

GADSP was created for people who providesupport, and want to further improve the lives oftheir clients or family members, and has recentlyaffiliated itself with the National Alliance for DirectSupport Professionals (www.nadsp.org). In less thana year, GADSP’s membership has grown to 150, withregional chapters in Tifton, Macon, Atlanta and thenewest in Athens. There are no membership fees.

Direct support professionals are encouraged totake a stand and join the GADSP by submitting theirname, agency name, address, phone number andemail to Lisa Robinson in writing. Fax 678-354-2670, email [email protected] or send theinformation to her in a letter addressed toSupported Employment Specialists, 615 Roswell Rd.,Ste. 160, Marietta, GA 30060. With questions, callher at 678-886-8009. l

Direct Support Professionals Take a Stand By Christina Rosell

(left to right) Joy Perry of the GADSP SteeringCommittee; Tom Kohler, a conference presenter;Lisa Robinson, the GADSP chair; and MaryLaLiberty, GADSP member.

Lisa Robinson accepts a House Resolutionhonoring DSP professionals on Disability Day.

“Clients can’t have a relationship ifthere is constant change. That’s really why the living wage is needed.”

g

www.gcdd.org 23

Full inclusion at all stages of life is key for people withdisabilities, and more people

than ever are embracing this goal, as the seventh Better All Together:Inclusion Works! conference drew724 people, its largest number ofattendees ever.

Organized by the Governor’s Council onDevelopmental Disabilities, the conference was heldMarch 1 – 4 in Athens, Ga., and featured 114speakers from all over the country who enlightenedattendees on topics ranging from including childrenin community living and person-centered planning,to employment options.

Speakers included professionals and people withdisabilities and their families, who shared theirpersonal hardships and ultimate triumphs as theymoved toward full inclusion in their communities.

One man’s fight to live in his community after

high school was an uphill battle. Through years ofadvocating, Fred Pinson, Jr., who has cerebral palsy,is successfully and happily living in the AvondaleEstates community. Pinson, 44, spoke during theconference about the transition period after highschool. Pinson encourages the person-centeredplanning model for people whowant to live in the communitybecause it allows individuals tomake their own decisions.Consumers have case managerswho focus on providing qualitycare and direct supportprofessionals to help with personal needs such asrunning errands, cooking, bathing and maintaining aclean home. A doctor or nurse, who serves as anassistant in nursing homes, is not necessarilyneeded every day. Family members, friends anddirect support professionals can learn to help with

the tasks. Pinson says, “I taught mybrother, who is nine years youngerthan I, to help me with those thingsbefore he was in fourth grade.”

Pinson offered suggestions forways to get involved and keep busyafter high school graduation. He said,“Your high school friends, especiallythose with disabilities, will probablystay in touch with you.” However, hesays that other friends will graduallydrift away. Pinson said, “To relievethe isolation, join a church or other

religious organization and develop relationshipsthere.” Pinson himself is a member of a church andhe is also very involved in his community as anactivist for independence.

Mary Kissel, Clara Berge and Candee Basfordhave spent years encouraging their children to makethe most out of every day and achieve their goals.The mothers, who spoke at the “Dreams We NeverThought Would Come True” seminar during theconference, shared how their children each haveestablished a life full of enjoyment and hope sincehigh school graduation.

By Katie Bishop

“To relieve the isolation, joina church or other religiousorganization and developrelationships there.”

Mary Kissel and Clara Berge share their children’s experiences

after high school (above). Audience members are inspired

by Fred Pinson’s battle forindependence (right).

Attendees Find Life is Better

All Together

When speaking of her son Eric’s manyaccomplishments since high school graduation,Kissel’s face lights up with joy. Eric Kissel, 38, livesin a house in Athens that his parents built. Throughsupported living, he is able to participate aroundthe community. He volunteers at the Athens foodbank, and his mother said that the people whoreceive the food give him the greatest gift. “It giveshim the chance to be a contributor,” she said.

The latest venture in EricKissel’s life is as an artist. As a result of a supportedemployment grant by theUniversity of Georgia, he is nowpresident of his own company,Splashes by Eric, selling hisartwork on note cards via hisweb site.

Mary Kissel said that as anentrepreneur, Eric Kissel is giventhe opportunity to makeimportant business decisionsand perform various jobs for the

business. He also gives back to the community bydonating a percentage of his earnings to GeorgiaOptions, a local community organization thatsupports people with disabilities to live in their ownhome. “Seeing him happy and healthy keeps usgoing,” Mary Kissel said.

Clara Berge shares the same joy for her son,Kenny. When her son was 17, Berge, from Queens,N.Y., began looking for ways that he could getinvolved in the community. She discovered a farmclose to their home where he could volunteer a fewdays a week. Kenny Berge, now 25, began workingin the chicken coop collecting eggs. His mother saidwhen they first walked into the farm, his face lit upwith a huge smile. “You could see that all that dust,and the smell and all that motion was exhilarating,”she said.

While the task was difficult to learn, Kenny

Berge enjoyed volunteering and later began toperform other tasks around the farm. Aftergraduation, Clara Berge refused the idea of adultservices and had her son live at home throughperson-centered care. With the help and encourage-ment of an assistant, Kenny Berge works at the farmevery day. “I do not have enough words to saythank you to the people from the farm for the waythey adopted Kenny as one of them,” she said.

Candee Basford, another mother, has beendreaming about her daughter Katie’s future since shewas born. After learning that her daughter hadDown syndrome, Basford was unsure of what thefuture would hold. However, after watching her playand learn with other children in her Head Startpreschool classroom, Candee Basford realized thather daughter’s future would be just as promising asanyone else’s.

Candee Basford, from Seaman, Ohio, says thather daughter has known all along what her dreamsare. At 16, she boldly told her mother that shewanted to go to college. Candee Basford wasshocked at first and didn’t see how it would bepossible. However, after listening to what herdaughter really wanted, she fought for her right toattend college. Katie Basford, now 27, is a studentat Southern State Community College in Ohio whereshe has a grade point average of 3.25.

“Katie has taught me the art of possibility, tomove beyond what we think is possible andappropriate and enter into that realm of what ispossible,” her mother said. Katie Basford takes everyscience class offered, because she wants to be a labassistant once she receives her associate’s degree.Candee Basford said that she hopes Katie’s presenceon campus will make people more welcoming andopen-minded. While it has been a struggle to gainsupport for her daughter to go college, CandeeBasford said that all she can do is listen to herdaughter and help her accomplish what she wantsto do.

These mothers’ eyes are filled with pride asthey each speak about their children’s determinationto create happiness and success. While life afterhigh school can be a struggle that includes applyingfor waivers, waiting for services and making multipledecisions, it is a struggle worth fighting. With thehelp and encouragement of family and thecommunity, people with disabilities can continueliving inclusive lives long after high school. Pinsonsaid it best, “Push away, push as hard as you can tolive on your own because it’s worth it.” l


FEATURE

“Katie has taught me the art of possibility, to move beyondwhat we think is possible andappropriate and enter into thatrealm of what is possible.”

Candee Basford shared howshe helped her daughterrealize her dream of goingto college.

A dvocates agree that the person-centered planning model is the bestway to determine needed services,supports and outcomes for peoplewith developmental disabilities. But a

few top disability experts are concerned that moreemphasis is being put on the process, instead ofwhere it should be – on the person.

During the recent Better All Togetherconference in Athens organized by the Governor’sCouncil on Developmental Disabilities, experts Dr.Beth Mount, Michael Smull, Lynda Kahn, JackPearpoint and John O’Brien shared their thoughts onperson-centered planning and their concerns thatthe process, which brings together service providers,people with disabilities and their families andcommunity members has become institutionalized.

The panelists felt too much focus was put onthe planning process, and not enough on the peoplefor whom plans were being developed. In addition,standardized forms were being used to facilitate theprocess, taking away the personalized nature of theprocess.

“If we think it’s just another form, just anothertool, we’re missing the point,” Pearpoint said.

“I think you could have a brilliant set of stepsin a process and you could entirely miss the point,”agreed Kahn.

Another worry was that more emphasis was puton the process than actually listening to people andproducing outcomes.

“When people are talking about their dreams,it’s fundamentally important to talk about questionssuch as why is that important to you? Why wouldthat bring meaning to your life? Without thosetypes of questions, you could end up with reallysuperficial kinds of dreams or goals,” Kahn said.

“I developed a PowerPoint slide that said a planis not an outcome, and it did not stop people frombehaving as if it were,” revealed Smull.

Mount agreed, saying,“Planning is such a small part.Making it happen is what’simportant. That’s why it’simportant to have the family,the person with a disability, the community anddirect support staff involved – they’re more likely tomove (the plan) along.”

O’Brien said while it was essential for peoplewith disabilities and their families to be involved inthe process, “Every time we recognize the reality ofpeople with disabilities and their families as havingan expert voice, we undermine the system thatsupports them. So it’s no wonder that the system isacting as a not very smart, but cunning collectivitythat wants to grab hold of this and turn it intosomething dead and routine.”

Smull suggested, “What we need to do is see ifwe can escape from teaching people to write plansand start teaching people who are implementing theplans how to think about people and the way we dothings and what we call a person-centered approach.How do we develop a set of activities . . . that give usthe outcome we’re looking for?”

Because he feels the system is threatened bygiving power to people with disabilities and theirfamilies, O’Brien said, “We know we’re makingprogress around person-centered planning if we’regetting into interesting kinds of trouble.” l

www.gcdd.org 25

BETTER ALL TOGETHER

Putting the PERSONBack in Person-Centered Planning

“If we think it’s just anotherform, just another tool, we’remissing the point.”

(left to right) John O’Brien, Jack Pearpoint, and Lynda Kahn sharetheir insights on person-centered planning.

By Lindy Dugger and Valerie Smith Buxton


EXPERT UPDATE

M ost of what I do in my practice isnot very complicated. I spend timewith people in ordinary places andsituations and try to get to knowthem. I always ask the person for

permission to meddle, and most people, even thosewithout a formal means of communication, let meknow that it’s OK. What I am most interested in isthe person’s story, the people and events that haveshaped their lives, the highlights and disappoint-ments, the ordeals and accomplishments. Whatoften emerges is a very human story, one that iseasy to identify with, one that is both extraordinaryand ordinary.

Often, what I learn from these stories is thatthe root of the person’s difficult behaviors isloneliness. Many of the people I meet have onething in common – they have lost connections tothe most important people in their lives. Some haveno contact with their families, or if they do, thecontacts are infrequent or tentative at best.Sometimes family members are there, but the personhas no friends, depending instead on people whoare paid to be with them.

Paid care givers can be wonderful company, butthey frequently change jobs or assume newpositions. The resulting instability can bedevastating to someone who is fundamentally alone.In Circle of Friends, Bob Perske describes how aperson whose life is devoid of meaningfulrelationships might feel: “We have only begun tosense the tragic wounds that so many [persons withdevelopmental disabilities] may feel when it dawnson them that the only people relating with them –outside of relatives – are paid to do so. If you or Icame to such a sad realization about ourselves, itwould rip at our souls to even talk about it.”

I believe that loneliness is the number onecause of difficult behaviors. We are relationalbeings, and the absence of meaningful relationshipswears us down and makes us sick. Imagine yourselfwithout the people you love for 30 days. You haveno idea where they have gone. Now imagine beingwithout them for 60 days . . . or longer. How are youfeeling? Are you sleeping well? What is your mood?My bet is that you are falling apart, spiraling out of

control. You want to be logical about all of this, butreason has taken a back seat to longing.

I met a man once who was very much alone.When he was a young boy, his family sent him to aninstitution. He had troubling behaviors, includingself-injury, that would not go away, regardless ofbehavioral strategies or medications. He refused todo things with other people and preferred to isolatehimself in his bedroom, wrapped tightly in blankets;they said he was “resistant to treatment.” Aftergetting to know him, I came to believe that histroubling behaviors and his resistance torelationships were the result of the trauma heendured when he was separated from his family, andfrom the systematic abuse he suffered at the handsof his “care givers,” often in the name of treatment(e.g., time out, seclusion, over-correction). This isto say nothing of the constant turnover in his staffand losing people he cared about.

When I suggested that trauma and lonelinessmight be at the root of his difficulties, one memberof his team said, “He’s not lonely. He has one-to-one coverage.” You can have ten-to-one coverageand be terribly alone. One way I like to explain thedifference between coverage and relationships is toask people to imagine that I have just returnedhome from a trip. I pull up in my driveway, anddiscover that my wife, Cyndi, is not home. Anotherwoman is standing at the door and I ask, “Where isCyndi?” She replies, “Cyndi is not home, but don’tworry. We have you covered.”

People generally laugh at this scenario, but itis exactly what happens to people who experienceour services time and again. There is a hugedifference between “coverage” and “relationships.”Our field keeps giving people coverage (andinterventions) when what they desperately need isto belong.

There are many things we can do to helppeople find meaningful and enduring relationships.As a starting point, I like the questions posed byMary Romer in her article, Two is Not Enough. Theystrike me as fundamental to anyone’s success: “Areenough people engaged in the person’s life?” “Arethere people who are imbued with the belief andhope for a brighter, better future for the person?”and, “If not, how might such people be found orhow might that sense of hope be instilled in thosecommitted to walking with the person?” l

David Pitonyak, Ph.D.,is a behavioralconsultant, dedicated tosupporting people withdisabilities who exhibitwhat some have called,"difficult behaviors."Pitonyak believes thatwhat is most neededwhen supportingsomeone who engagesin difficult behaviors isimagination, which isthe name of his firm.His practice is basedupon a simple idea:difficult behaviors resultfrom unmet needs.

“There is a huge difference between‘coverage’ and ‘relationships.’ “

The Importance of Belonging

David Pitonyak, Ph.D., Imagine

Reprinted with the permission of TASH

www.gcdd.org 27

CALENDAR OF EVENTS

MAYMay 2-5American Assoc. on MentalRetardation – InternationalAlliance for Social InclusionSummitMontreal, Quebec Canadawww.aamr.org

May 8-9Easter Seals Project Action– People on the Move: UsingAll Transportation Options(ADA & Beyond)Alexandria, VAwww.projectaction.org

May 8-10National Conference onReuse of AssistiveTechnology DevicesGeorgia Tech Conference CenterAtlanta, Georgia(703) 524-6686 ext. [email protected]

May 22-25National Council onIndependent Living 2006Conference, “Ending theInstitutional Bias”Grand Hyatt • Washington, DCwww.ncil.org

May 25-272006 Georgia PsychologicalAssociation Annual MeetingHilton Sandestin Beach GolfResort & Spa • Sandestin, FL

JUNEJune 4-7NACDD Annual Meeting & Technical AssistanceInstituteBaltimore, MDwww.nacdd.org

June 14-16Career Opportunities forStudents with Disabilities,7th Annual National MeetingAtlanta, GAhttp://www.cosdonline.org/index.shtml

June 21-22Long Road Home March &Caravan, Georgia’s AnnualCelebration of the OlmsteadDecisionRome, GA & Atlanta, [email protected]

June 28-30APSE: The Network onEmployment – 17th AnnualNational Conference onSupported EmploymentMarriott Copley Place Boston, MAhttp://www.apse2006.org

JULYJuly 18-22Association on HigherEducation & DisabilityAnnual Conference

San Diego, CAwww.ahead.org/training/conference/index.htm

July 20-21Governor’s Council onDevelopmental DisabilitiesQuarterly Council MeetingAtlanta, GA404-657-2126www.gcdd.org

July 21-23National Annual DownSyndrome CongressConventionAtlanta Marriott MarquisAtlanta, GA800-232-6372 or 770-604-9500www.ndsccenter.org

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

The 8th Annual Disability Day at the Capitol

February 23, 2006

ProudlySalutesMay 25 - 28

8th Annual National SelfAdvocates Becoming Em-powered (SABE) Conference“We Had a Dream: Now We Have the Power”Network with people withdevelopmental disabilities from allover the country and Canada;attend great workshops; hearrenowned speakers; and, celebratewith other attendees during funsocial activities, at the conference,sponsored by SABE Regions 6 and 9.Atlanta Hilton • Atlanta, GAwww.sabe2006.com


Agatha Christie said a really smart thing, “I likeliving.” She thinks life is wonderful. And I think sotoo. Agatha Christie also said that life is not alwaysfun and happy. She has been really, really sad. Shehas even felt “acutely miserable.” But even thoughlife is hard sometimes, you cannot give up. That isan important message – don’t give up. Life really isgreat. She wants us to understand that everyone hasbad days. She wants everyone to like living.

I also like living, but my life is not easy all thetime either. There are many challenges in my lifethat I have to overcome. Sometimes it is hardhaving cerebral palsy. Sometimes I get very sad too.Sometimes homework is really hard. The mostrecent, big challenge I had was when I gotdiabetes.

I got diabetes at age 15 on November 29,2004. My parents took me to the Children’s HealthCare of Atlanta emergency room that night. Theywere so sad and scared. I felt really sad too. Theysaid, “Phillip Modesitt, now you are at Children’sHealth Care of Atlanta.” I asked my mom what waswrong with me, but she said, “I don’t know, Phillip.The doctors will help you.”

The nurses stuck needles in me. The hospitaldidn’t smell very good. I could smell my mom’sperfume. The LPNs (licensed practical nurses) gaveme blood sugar checks all day and all night, all dayand all night. The needles hurt when they touchedmy skin. I could not walk at all. I was sick in bedand I cried all day. The tears tasted salty.

I stayed at the hospital for five days. After I

got home I learnedhow to deal withdiabetes. Now I havethe pump. The pumpis like a fakepancreas. It givesme insulin. Myblood sugarnumbers staybetter, and I feelbetter. I have abetter chance ofliving a healthylife now. I alsoeat better. Butwhat I really learned is that I wanted tolive. I wanted to get out of the hospital. I wantedto go home and have my normal life.

I still deal with diabetes every day, and I stillhave to take blood sugar tests a lot. Even though Iam good at it, my numbers still go up for unknownreasons. But I am dealing with it all.

Diabetes is a serious thing. Having diabetestaught me a lot. It is important to take care of yourbody, because you only get one. I learned to takecare of myself in order to stay healthy. I alsolearned also how my body works. It is even moreimportant now that I have diabetes because if Idon’t I could become very sick and maybe even die.I learned to control my diet to live a healthier life.I learned that exercise is important too.

This experience has taught me all this and moreprobably. I have many challenges, but I just have toaccept them and live. I know that the sick timesand the sad times will not be forever. I have a lot ofvery happy times in my life too. Like for example, Ihave great times with my friends and family. Evenwith diabetes and cerebral palsy I will persevere.I’ll keep going until I succeed.

Mostly though, I am just happy to be livingthis life. Life really is “a grand thing.” l

Never Give Up!By Phillip Modesitt, a ninth grader at North Atlanta High School

StraightTalk

Maxim: “I like living. I have sometimes been wildly,despairingly, acutely miserable, racked with sorrow,but through it all I still know quite certainly thatjust to be alive is a grand thing.”

-Agatha Christie

Phill

ip M

odes

itt w

ith h

is s

iste

r, G

reta

www.gcdd.org 29

pg. 9 pg.18 pg. 23pg. 12

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

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

Georgia Advocacy Office (GAO)www.thegao.org404-885-1234 • 800-537-2329

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

Direct SupportCentral Georgia Tech DSP Coursehttp://www.centralgatech.edu/catalog/section6/ah/Direct_Support_Professional.htm

HousingGeorgia Housing Searchwww.georgiahousingsearch.org

RESOURCES

pg.18pg. 12 pg. 23pg. 9


Albany ARC, serving our community

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

the development of programs on their behalf.

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

www.albanyarc.org

Albany AdvocacyResource Center

If you are interested in being a sponsor for Making a Difference magazine, please call

Christina Rosell @ 770-578-9765

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

“Complete developmentaloccupational therapy

for children –toddlers through teens.”

Thanks to OUR SPONSORSfor their Support.

SUPPORTING THE DISABILITY COMMUNITY

www.gcdd.org 31

SPONSORSHIPS

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 4 • Spring 2006

Disability Day• FEBRUARY 23, 2006 •

Documents

Making a Difference Magazine || Spring 2006