Making a difference [Vol. 6, no. 1 (Summer 2005)]

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Features
10 Advocates, State Work to Free Children
Advocacy organizations and state agencies hope to move children out of state-funded institutions within the next five years.

20
Marchers Demand People Be Released from Institutions
Disability advocates mark Olmstead with marches, rallies and civil disobedience.

7
ADA - How it Impacted Children
More integration of children with disabilities is a direct result of many ADA provisions.

Photos by Harris Hatcher.

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

16
The Hunt for Integrated Recreation
Many activities for children are happy to make accommodations so those with disabilities can join in the fun.

Departments

About Our Cover: Jerilyn Leverett of Disability Connection in Macon, and her daughter Victoria were only two of about 100 advocates who participated in the Long Road Home March II.

4
GCDD Viewpoint Community Living is the Best Choice for Children
Advocates join together to move children out of institutions.
5
From the GCDD Chair Supporting Families Key to Helping Children
Keeping children at home can be done with a little support for families.

6
Around GCDD
Find out who won GCDD's awards and how GCDD grants helped fund projects for Georgia's kids.
8
News & Events Special Olympics a success; Full Participation
advocates to meet; family events planned; Georgians celebrate ADA; disability group exhibits art; Public Policy fellowship offered.

19
Straight Talk
Freed man lives his American dream.
26
Perspectives
Two mothers fight for services for their sons.
29
Medical Update
Emory opens new facility for people with disabilities and their families.

2 Making a Difference Summer 2005

Making
Difference
Volume 6, Issue 1 Summer 2005
A quarterly magazine of the Governor's Council on
Developmental Disabilities.
The Governor's Council on Developmental Disabilities collaborates
with Georgia's citizens, public and private advocacy organizations and policymakers to positively influence public policies that enhance the
quality of life for people with disabilities and their families.
GCDD provides this through education and advocacy activities, program implementation, funding and public policy analysis and research.
Lynnette Bragg Chair
lynnettebragg@aol.com
Eric E. Jacobson Executive Director eejacobson@dhr.state.ga.us
2 Peachtree Street NW, Suite 8-210 Atlanta, GA 30303-3142 Voice 404-657-2126 Fax 404-657-2132 Toll free 1-888-275-4233 TDD 404-657-2133 www.gcdd.org
Valerie Meadows Suber Editor-in-Chief &
Public Information Director vmsuber@dhr.state.ga.us
Valerie Smith Buxton Managing Editor
O'Neill Communications, Inc. val@oneillcommunications.com
O'Neill Communications, Inc. Design & Layout
Harris Hatcher Cover Photography
Michael Faber Cartoonist

To Georgia's Disability Community,

W

hen people are given the opportunity to reach their fullest potential, amazing things happen . A good example of this theory occurred last month when the Federal Government recognized Georgia for its development of the Mental Health Peer Specialist

Program. Consumers involved in Peer Specialist Programs have accomplished goals

in education, employment and independent living that few

believed could ever happen. When barriers and biases are

removed, the human spirit takes over, which results in great

things happening to improve the quality of an individual's life.

Georgia's Mental Health Peer Specialist Program will be used as a national model to pave the way for other states to follow in the area of Consumer Driven Service Delivery. By utilizing Peer Specialist Programs as a catalyst, we must now challenge ourselves to ensure that as many Georgians with disabilities as possible have the same opportunity to reach their potential in community-based settings within a Consumer Driven Service Delivery System .

To facilitate this transformation, two initiatives have originated within the Governor's Office. First, the Commission for New Georgia's task force on Behavioral Health and Disabilities Service Delivery is charged with developing recommendations in service delivery that will promote better long-term outcomes by using evidence-based or best practices to become more efficient. Our second initiative is transformation of our Medicaid system. We are in the beginning stages of this exciting, but difficult work, aimed at transforming our Medicaid program in a way that educates consumers to make better health care choices. Many people wonder if Medicaid consumers can make better health care choices. I believe that they can with educational strategies targeted to their specific needs; too often, people live up to the expectations that public assistance programs place upon them. When given the proper tools and obtainable goals, Medicaid consumers and providers in the "New Georgia" will be expected to make informed choices based upon quality of care and cost effectiveness, with the ultimate goal of improving individual health outcomes.

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

Jnmc?/!:!::
Governor

www.gcdd.org 3

Community Living is the Best Choice for Children

A s this edition of Making a Difference goes to print, we in the disability community celebrate two landmark events: the sixth anniversary of Olmstead v. LC and EW and the 15th anniversary of the Americans with Disabilities Act. Both advance the values that all people have gifts to share in neighborhoods, towns and
cities across this country. Both reinforce the belief that all people should live in real homes rather than in segregated places like state institutions or nursing homes.
Today, there are over 140 children under the age of 22 living in nursing homes, private and public facilities in Georgia. Georgia remains in the top 10 in the number of children living in institutions. Six years after Olmstead, we still have children living away from their families for no crime other than having a disability. This cannot be acceptable. We have the experience of closing Rivers Crossing and showing how to support children in real homes rather than institutions.
The Georgia Advocacy Office, Institute on Human Development and Disability, People First of Georgia, Statewide Independent Living Council, members of the State Alliance for Full Participation Team and the Governor's Council on Developmental Disabilities have joined together to focus on creating a Georgia where children are prevented from going into institutions or are brought safely home from facilities into homes and families.
How To Reach Us
Letters should include the writer's full name, address, phone number, and may be edited for purpose of clarity and space.
Contact Our Editor: Valerie Meadows Suber, vmsuber@dhr.state.ga.us, 404-657-2122, Fax 404-657-2132 or: 2 Peachtree Street. NW, Suite 8-210, Atlanta, GA 30303-3142
Audio or Large Print Versions: For an audio version of Making a Difference, please contact GCDD. A large font version is available for download at www.gcdd.org.
Subscriptions I 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 necessarily reflect the opinions of GCDD, the editors or state government.

We are committed to continuing to ask the questions: "Why are kids living in institutions?" "How can we get them out?" and "What will it take so that no child from Georgia ever has to live in an institution or nursing home again?" Over the next few months and years, you will hear a lot about this issue. Together, we are producing a video and publications to tell the story of those who have left and those who remain. We will be meeting with policymakers, legislators and the media to discuss how we can find ways to get children home.
"What will it take so that no child
from Georgia ever has to live in an
institution or nursing home again?"
We have heard too many stories like the one about a two-year-old who had never been outside because the institution staff did not think she could go out and had to wait for a doctor's permission. We won't be able to tell every story because some want to keep it secret in the name of confidentiality. But you can be sure this coalition will persevere and grow stronger in its desire to meet our goals.
This edition of Making a Difference is dedicated to these children and telling their stories. It's about what is needed so that every child has a safe and loving home outside the walls of any institutional setting. We will need your help, and I encourage you to contact any of the organizations involved and ask how you can get involved.
Let us know what you think about the magazine or any issue concerning people with disabilities and their families. We welcome the opportunity to print thoughtful responses to specific articles published in Making a Difference. You can reach me at 1-888-275-4233 or you can e-mail me your thoughts at eejacobson@dhr.state.ga.us.
~e~~
Executive Director, GCDD

4 Making a Difference Summer 2005

Supporting Families
Key to Helping Children
T his quarter's magazine is devoted to children's issues. We all know that our future is in the hands of our children. Our main focus, as a society, is to build the next generation to be better than ours. To do this, we must focus on some important issues.
The most important issue for children is supporting families. The family unit is the core for all our values, where we are taught love and the basic skills of survival. Families who have children with developmental disabilities have challenges beyond those of families without disabilities. When our son Matthew was 12, he said families of children with disabilities are blessed because the family has to have more love in it than other families. It requires a level of devotion and determination that is so very different from families who do not have children with disabilities.
However, the divorce rate among families of children with disabilities is very high. Randy and I have been married 32 years, and there have been times when it was very stressful. Scott took so much time to care for, it left no time to build and maintain a relationship. Without the support of Scott's grandparents, I don't know if we could have survived. Randy often said that Scott was a wedge and Matthew was the glue that held us all together. Family support must be a priority. We did not have the availability of family support 20 years ago when I was diagnosed with lupus and was in need of major surgery and Pappaw had a heart attack. We were advised that Scott would need to live at Gracewood. We opted instead for the Autism Group Home in Riverdale. After living there for a while, it took Scott four years before he would sit next to me and show me affection. With just a little bit of support for our family, Scott would not have gone to the group home. We must stay devoted to the task of supporting families through Family Support and Natural Support Enhancements and continue working with the Family Connection Collaboratives in each Georgia county.
The second most important thing we can do for our youth is to educate them. Throughout my last 13 years with GCDD, education has been a priority. Real education, the kind that not only teaches the skills of living independently, but also teaches the basics, is imperative. A woman from Macon told us she went to school until she was 21 and upon leaving school found she could not get a job or further training because she was never taught to read. She learned to cook, make her bed and clean her home, but not to read. She enrolled in adult literacy classes, went on to the vocational technical school where she learned to read and is now successfully employed. We need to recognize the No Child Left Behind program needs a lot of support and educators need a lot of flexibility in teaching children with differing ways of learning. This is not a cookie cutter program, and our teachers need all of the help we can give to help our children succeed and learn.
As my term as chair of the Governor's Council on Developmental Disabilities comes to a close, I challenge each of you and the great state of Georgia to continue supporting families, children and adults with disabilities to lead Real lives, have Real learning Opportunities, work in Real Jobs and have Real Homes, Real Friendships and Relationships, while maintaining Choice and Control over their lives.
www.gcdd.org 5

Grants Help Oilldren With Disabilities

The Georgia Governor's Council on Developmental Disabilities has recently

The Baldwin Service Center in Milledgeville used its grant to form an alliance called the No Boundaries Club that works closely with students who are in

awarded grants to organizations that provide information on advocacy and resources for

sororities and fraternities at Georgia College and State University. The students and the center are currently working together to perform puppet shows in t hird

children with disabilities to the grade classrooms. The child size puppets

community. There were four large grants distributed this year, the Georgia Advocates

teach t hird graders about developmental disabilities and how to respect people with disabilities. The puppets have various disabilities and also each have a sibling

for Rights for Children's

puppet that demonstrates what life is like

Healthcare, the Baldwin Service Center, the Flint River Area Barrier Busters and the

if a family member has a disability. With the money from the GCDD grant, the Baldwin Center and the college students have been able to obtain the materials

Southern Juvenile Defender Center. All of the organizations used the grants to provide

needed to begin the puppet shows in the upcomi ng fa ll school year.
The people of Cordele and Crisp County are isolated due to physical and

knowledge and information

attitudinal barriers. The Flint River Area

to the community about developmental disabilities.

Barrier Busters (FRABB) recruited and trained high school students with and without disabilities to promote awareness

Georgia Advocates for Rights for

of disability issues and create a more

Children's Healthcare provides support to accessible community. FRABB members

medically fragile children . Beginning as a modeled leadership and self-advocacy

small group who has always been assisted skills and provided opportunities that

by t he Georgia Advocacy Office,

promote students as future leaders.

the Georgia ARCH has been

The Sout hern

learning the ways of advocacy as they go.

"We never could

Juvenile Defender Center at Emory

With the grant money from have reached out
GCD D, Georgia ARCH was

University used its GCD Dgrant to create a

able to reach legislators

to the legislators

with informative DVDs and

specialized web site to disseminate information

inserts about medically fragile children and t he

like we did without about best practices to
individuals with

need for Medicare to care for t he children.
Pam Moore at Georgia

the funding."

disabilities and their families. They also worked to increase

ARCH , said,"We never could have reached

information and support about consumer-

out to the legislators like we did without

directed care and family support programs.

the funding."

With the GCDD grants, the

The 300 DVDs that were sent out

organizations worked hard to promote

have received an enormous amount of

acceptance and support for people with

positive response. The money helped the

disabilities by focusing thei r time on

Georgia ARCH get rolling with advocacy,

advocating for others and educating the

and they now are able to take the next

community about developmental

step to forming legislation.

disa bilities.

6 Making a Difference Summer 2005

Awards Bestowed on Those Who Make a Difference
Many Georgians advanced the causes of people wit h disabilities t his year, through advocacy, leadership, t he media and politics. The Governor's Council on Developmental Disabilities recognized the follo wing people fo r their extraordinary contributions to the disability community July 21 in a ceremony during its quarterly meeting.
C. Anthony Cunningham Leadership Award
Lynnette Bragg
Advocates of the Year Awards
Recognizes individuals active in Independent Care Waiver Prog ram efforts: Greg Harry Kiley Hayes Edwin McWilliam Andreena Patton Samantha Renfroe Ashley Rhinehart Cindy Saylor
Media Professional of the Year
Tom Corwin from the Augusta Chronicle
Legislators Leadership ' Awards
State Rep. Jeff Brown
(R-LaGrange)
State Sen. Sam Zamarripa
(DAtlanta)
State Sen. Sam Zamarripa (left) at Disability Day
Read the next issue of Making a Difference for more information about these award winners.

ADA Has Changed Children's Lives

By Nancy Duncan, Executive Director Georgia ADA Exchange

This year, as we celebrate the 15th anniversary of the passage of the Americans with Disabilities Act we decided to review some of the provisions of the ADA that have positively affected the lives of children with disabilities.
Childcare
Childcare programs now may not exclude children just because they have a disability. Just how much the provider must do to accommodate a child depends on the resources of the provider. There have been several important court cases wherein large childcare chains have been required to provide even such extensive accommodations as tube feeding or catheterization.
Smaller firms have to do "something." If they are very small, they may not be able to afford to make their building wheelchair accessible, but there is no reason why they cannot make program alterations that meet the needs of children with Down syndrome or a hearing loss. If the centers have a place for changing toddlers who wear diapers, they must be willing to change older children whose disability requires them to continue to wear diapers.
These requirements apply to day care and after school care programs. Georgia has an excellent network of inclusion specialists for childcare providers who can work with individual children, care providers and families. For more information on these specialists call 404-4630009 or visit www.decal.state.ga.us.
Recreation Programs
Both private and public recreation programs are covered by the ADA and are required to serve children with disabilities. Organizations such as the YMCA or county parks may have special programs just for children with disabilities such as wheelchair basketball or swimming for children with developmental disabilities. However, these special programs do not give the recreation provider an excuse to bar children with disabilities from their regular programs.
Private programs must provide accommodations based on their financial resources. So a small rural baseball league might not have to build a fully accessible field, but it must figure out ways of including children with disabilities in their program. As for county and city-run programs, size is not important. If they can afford to have any recreation programs, they must include children with disabilities in these programs. Both the ADA and Section 504 of the Rehabilitation Act require city and county programs to serve all children. This holds for summer camps, leagues, classes, recreation centers, etc. All of the programs offered by a city or

county must be available to and inclusive of people with disabilities.
The excuse of "too dangerous" cannot be used unless there is a high probability of danger. This probability must be applied to each individual child based on his/her specific abilities. So, a program cannot say "Chi ldren with visual impairments cannot participate in the summer program si nce they might get hurt during physical activities." That policy is too broad, and thus, is a violation of the ADA.
Medical Facilities
Doctors' offices are covered under the ADA in the same category as restaurants and hotels (Title 3). This means that a doctor cannot exclude children just because they have disabilities. Obviously, a doctor may not be an expert on a particular disability, but they can serve as a primary care doctor consulting with other specialists as needed. A practice cannot say, "we do not take children with disabilities." Based on the size of the practice, wheelchair access should be provided from the parking lot throughout the office, including the examining table. Sign language interpreters must be provided, when appropriate, and paid for by the doctor's office. The staff must accommodate the child's need for more time, more explanations, etc. Hospitals too, are covered by the ADA and must make special accommodations as needed by the individual child.
For more information on the ADA, please contact the Georgia ADA Exchange at 770-451-2340 or www.gaada.info, or the Southeast Disability and Business Technical Assistance Center at 800-949-4232 or www.sedbtac.org.

www.gcdd.org 7

Special Olympics
Georgia a Success
Nearly 2,000 athletes competed in Olympic-style events at this year's Special Olympics State Summer Games at Emory University June 3-5. With the help of over 1,000 volunteers, the 35th anniversary games were a huge success. Patrick Kerney and Jim Mora of the Atlanta Falcons encouraged the athletes, while the mascots Maxi mus of the Gwinnett Gladiators, Thrash of the Atlanta Thrashers and Homer of the Atlanta Braves performed for the audience and athletes.
The athletes competed in aquatics, artistic gymnastics, badminton, volleyball

Special Olympics pa rticipants enjoy a day of sports and activities where everyone left a win ner {photos at left and bottom left}. Photos courtesy Andrew Kornylak.
and table tennis. Unified sports where people with and without disabilities compete together included volleyball, soccer and tennis. Athletes proudly showed off their medals, but as always, everyone left as a winner.
For more info on the Special Olympics, visit their web site at www.spedalolympicsga.org or call 770-414-9390.
Full Participation Advocates Meet in Washington
The Alliance for Full Participation (AFP) will host the first ever Summit 2005 in Washington DC September 21-23. The Many Voices, Many Visions campaign will bring together 3,000 people including lawmakers, advocates, families, people with disabilities and advocacy experts who are com mitted to making the

Developmental Disabilities Act for Americans a reality.
The summit's mission is to create a social agenda for the dream of full participation. The theme for this year's conference emphasizes leadership, selfdetermination and community membership. This year's summit is designed to be a groundbreaking event and will encourage greater awareness, debate, discussion and unity among the multiple groups in attendance.
Renee Pietrangelo, chair of the founding steering committee, said, "We weren't really sure how big of a turnout we would get, but it looks as if it is going to be a huge event!"
Teams of stakeholders have been developed to represent each state at the convention . Once they have established a social agenda for the nation, the stakeholders will implement the plans within each state. The teams are critical to helping the summit achieve its larger goals of building consensus within states about necessary actions and policies at the state and national level to improve the lives of people with disabilities.
The AFP has collaborated with the Safe Advocates Becoming Empowered (SABE) Executive Council to develop a plan to move forward together to assure that the AFP Summit 2005 planned for September fully integrates self-advocates throughout the process. This collaboration assures that the Alliance for Full Participation is a productive, longterm process, before and after the September meeting, which will significantly improve the quality of life for all people with disabilities.
Registration for the summit is available online. For information on attending the summit, please visit www.allianceforfultpartidpation.org.
MANY VOICES ONE VISION
FULL SUMMIT 2005
PARTICIPATION

8 Making a Difference Summer 2005

Family Cookout Offers Workshops and Fun
All Children Are Special is hosting a family cookout and outing on August 20 that will bring together organizations that want to enhance the quality of life for children and those transitioning to adulthood with cognitive and physical disabilities and the family members.
Attendees will receive critical information about programs and resources for their children available throughout metro Atlanta. Workshops will host speakers from Georgia Community Support and Solutions, Georgia Parent to Parent, Atlanta Alliance on Developmental Disabilities, disABILITY LINK and the Governor's Council on Developmental Disabilities.
In the afternoon, families will enjoy food, fello wship and entertainment with jazz and gospel performances. Celebrity Olympic Gold Medal Winner Curtis Lovejoy will also be in attendance. All proceeds will benefit All Children Are Special, a nonprofit advocacy organization.
For more information on the event or volunteering, contact Helga Moore at 404-429-5901 or Norma Stanley at 770-873-3245.
Georgians Celebrate 15 years of the Americans with Disabilities Act
This summer marks the 15th anniversary of the landmark passing of the Americans with Disabilities Act (ADA). To commemorate this important milestone, Georgians are participating in the "Spirit of the AON' campaign.
The campaign is a 22-day celebration of events throughout the state, ending with a bang on July 26 in downtown Atlanta. The celebration, which will take place from 10 AM - 2 PM , begins at The King Center with a torch race and concludes at Centennial Olympic

Park and the Georgia World Congress Center with a commemoration .
The day will be filled with educational training, disability awareness and fun and games! All ages of people with and without disabilities are welcome to attend the exciting celebration. Marc Wilkerson with the State ADA Coordinator's Office said the event is "really targeting the youth and senior citizens because they can both benefit from the education training and awareness as well as the resources available. " Children without disabilities will have an opportunity to experience working with assistive technology and senior citizens will be trained in how to cope with disabilities they may experience in the future.
In addition to learning and advocacy, sporting events, arts and crafts and entertainment are planned. To celebrate the momentous occasion, local guest celebrities will make an appearance to join in the fun. Wilkerson said the event is meant to be "fun-filled as well as serve a purpose."
For more information, contact Mark Wilkerson, 404-657-7313 or mwilkerson@gsfic.ga.gov.
"Freedom " is a communal piece of artwork created by Bridge to Comm11 11 ity.
Art Exhibit Includes Disability Group
The Spruill Art Gallery in Atlanta recently hosted an exhibit titled "Looks Good on Paper." The display ran from

May 5 to June 25 and included 150 pieces of work on , of and about paper. Two of the pieces of art were done by people with developmental disabilities. The first piece entitled "Freedom" is a communal piece of artwork created by Bridge to Community, a group supported by the Cobb-Douglas Community Service Board. The group's instructor, Jim Slattery, also has developmental disabilities and created the second piece of artwork titled "Beginning of Forgiveness."
All works were hand selected by Ben Apfelbaum , the gallery director and curator of all shows. The gallery focuses only on the pieces of work and does not segregate artists. Apfelbaum said, "All works are judged by their artistic quality only; I am not interested in the artists' biography."
The Spruill Gallery is located at 4681 Ashford Dunwoody Road in Atlanta. For more information, visit www.spruittarts.org.
Apply for the 2006 Parent Public Policy Fellowship Program
The Joseph P. Kennedy Jr. Foundation, which supports the creation of national programs for persons with intellectual disabilities and their families, is seeking parents of persons with intellectual disabilities for an intensive, one-year Public Policy Fellowship in Washington, DC.
During this fellowship, the applicant will learn how legislation is initiated, developed and passed by Congress and will actively participate in public policy development. Kennedy fellows receive first-hand knowledge and experience in the development of public policy in key areas such as special education, health care and mental health care to improve the quality of life for individuals with intellectual disabilities.
For information on the application process, please contact Jill Fosse at 301-565-5476. All applications must
be postmarked by Sept. 1, 2005. e

Participa ting in the Long Road Hom e March fl in Jun e, Victoria Leverett co nfirms that children with disa bilities make valuable co ntributions when they live and thrive in their co mm.unities instead of institutions.

W hen disability advocates at the Georgia Advocacy
Office discovered 141
children under the age of 22 were
still living in state-run institutions,
intermediate care facilities, nursing
homes and a private facility, they
knew something had to be done.
"The GAO knew of some children and had asked the state of Georgia for a list of children in staterun facilities," explained Patricia Nobbie, D.P.A., deputy director of the Governor's Council on Developmental Disabilities (GCDD).
Once the GAO received the list, it joined with its federal partners, GCDD and the Institute on Human Development and Disability (IHDD). "It was a big effort, and we wanted as much influence as possible to help us change the policy," explained GAO Project Director Gillian Grable. "Some states have ended the institutionalization of children. We wondered, 'How can we help the state of Georgia become one of those states?"'
The federal partners, along with People First and the Statewide Independent Living Council (SILC) helped successfully lobby for a resolution in the Georgia House of Representatives in the 2005 legislative session.
The Children's Initiative Resolution (House Resolution 633) urges the Department of Human Resources (DHR), the Department of Community Health (DCH), the Department of Education (DOE), the Department of Labor (DOL) and the Department of Juvenile Justice (DJJ) to present the General Assembly with a plan to provide home and community-based supports to children under the age of 22 who are currently living in state-run facilities and to implement the plan within five years. The resolution

also calls for the Speaker of the House to appoint an

oversight committee to help develop the plan that

includes people with disabilities, members of the

legislature and members from GAO, GCDD and IHDD.

Georgia Rep. Judy Manning (R-Marietta), who is

the chairman of the Children and Youth Committee,

brought the resolution to the House. "Children don't

need institutions. They need their families and their

communities. They need attachments so they can

bond and gain independence.

"This committee will work together to make

solutions for these kids. The resolution asks these

groups to come together to come up with solutions

to the waiting

list problems. #Some states have ended

The committee will take the

the institutionalization

lead to offer of children. We wondered,

the state departments

'How can we help the

solutions to state of Georgia become

solve problems and get kids

one of those states?"'

out of insti-

Gillian Grable, GAO

tutions and

back into their communities."

Grable stressed that once children leave

institutions it is important to place them in

"permanent, loving homes where there is a

significant adult who loves them."

Support for the Children's
Freedom Initiative
Nobbie said support for the Children's Freedom Initiative already exists in some of the state departments. "Gwen Skinner (director of DHR's Mental Health, Developmental Disabilities and Addictive Disease division) has said publicly that she is committed to moving these children into the community."
While the advocacy organizations know at least 141 children are in state-funded care, they do not

1 0 Making a Difference Summer 2005

"Children don't need institutions. They need their families and their communities. They need attachments so they can bond and gain independence. "
GA Rep. Judy Manning

A Powerful Coalition
Advocacy organizations came together in Georgia to provide a unified voice for children with disabilities who are living in state-run institutions, hospitals, intermediate care facilities, nursing homes and a private facility.
GCDD - The Georgia Governor's Council on
Developmental Disabilities is the state planning council mandated by Congress through the Developmental Disabilities Act. GCDD provides resources and a forum for people with disabilities and their families to increase inclusion, independence and integration within the community.
www.gcdd.org
GAO - The Georgia Advocacy Office is a private
nonprofit corporation that works with people with developmental disabilities to secure their protection and advocacy. GAO, mandated by Congress through the Developmental Disabilities Act, has been designated by Georgia as the agency to implement protection and
advocacy within the state. www.thegao.org
IHD D- The Institute on Human Development
and Disability, mandated by Congress through the Developmental Disabilities Act, works with others to improve the quality of life for people with developmental disabilities and their families through education, research and public service within the community.
www.ihdd.uga.edu
SIL( - The Statewide Independent Living
Council of Georgia is a nonprofit organization that provides disability information and assistance to seven Centers for Independent Living (CIL) around the state. rhe CILs are nonresidential, community-based organizations that offer a wide variety of services to people with disabilities and their families including peer counseling, independent living skills training, individual and systems advocacy and information and
referral. www.silcga.org
People First - People First is a self-
advocacy group that is based on the principles of self-determination and freedom to make individual choices. Members of the group support each other while advocating for important issues and learning about their rights and responsibilities.
www.disabilitylink.org/docs/people.html
www.gcdd.org 1 1

Living in a Residential Home

Who: Brad Thompson

Age: 17 years old
Support: Mental Retardation Waiver Program (MRWP) - a home and community-based waiver for people with
Brad Th ompson enjoys .spending
time witlr llis mom Denise Fuller. developmental disabilities

MHDDAD Directo r Gwen Skinner and Dr. Steven Hall, di rector of tir e Office of Developmenta l Disabilities, share advocates' comm itments to moving child ren out of institutions wit/1 Mark Jolrnson, director of advocacy at tire Shepherd Center (left to rig/rt).
families," Grable said. "Essentially, their stories are - 'When I needed help - either with physical or emotional support for my child - there was no

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"This family has made remarkable differences - he's progressed so much," his mom said. "He does sign language, he asks for things, dresses himself, puts on his socks." She explained that although Brad doesn't communicate his feelings verbally, he smiles most of the time and is loving and caring.
Fannie Johnson, Brad's live-in companion, said he has improved his self-degrading behavior since he moved in seven months ago. "He likes to hug and smile at you," she observed.

Summit to Raise Awareness
The three national advocacy groups - GAO, GCDD and IHDD, will not only provide input into the planning process, they will also help fund it, starting with the Children's Freedom Initiative: A Summit For Change, to be held August 25-26 at the Atlanta Community Food Bank. "The summit

will raise awareness of the initiative, set forth the

problem and start the work plan," Nobbie said.

know all of the children's names or circumstances, Nobbie said. The children could be medically fragile or have mental illness or developmental disabilities.
GAO is gathering information on the children. "Over the last number of months, we started to meet these children and get to know their

The groups will facilitate meetings between the state agencies and pay for oversight committee meetings, respite care and travel reimbursement for committee members. "We expect the planning process to cost about $100,000," Nobbie said.
In preparation fo r the summit, IHDD is collecting stories about children who currently live in state-run facilities, according to its director

1 2 Making a Difference Summer 2005

Zolinda Stoneman, Ph.D. "We're collecting stories across the state that
feature families and children who have been caught in this situation and been hurt by it so people can have an idea how this affects real children and their families," Stoneman explained.
While DHR will serve as the lead state agency, the other agencies will also have important roles, and each agency has different funding streams that may help support the implementation of the plan.
"The DOE wants to be prepared for 141 new students, and the Department of Labor's Vocational Rehabilitation department will need to offer job support to the teens," Nobbie said.
As part of the resolution, the state agencies will have to report to the legislature and the oversight committee every year on their progress. And Nobbie said they have to consider the future. "We have to close the back door so more kids don't go into institutions and nursing homes," she said.
Stoneman added, "Families really don't want their children to leave them. But the state isn't providing the support they need to keep the children at home. One of the things we learned when we began collecting stories was there were things that could have happened to keep the families together like behavioral support, medical and health support or information. None of the families wanted to give up their children."

Importance of Community

Nobbie feels living in the

community is very important for

children . "It's a human right for a

child to live in a family and have the

same experiences that other kids

have. Institutions don't do that.

Children who live in institutions don't

have contact from significant loving

others. In many cases parents can

only visit on the weekend, and the

children don't have any toys, pictures

or any personal things there," she

stated. "Some children are even

living on a locked unit.

Membership in a

"These children want jobs and a community pool

high school education. They shouldn't allows Roberts to

be confined in an institution where swim year round.

opportunities are so limited," she

stated. "Institutions are no good for people."

In addition, some children who are currently

living in institutions leave the institution to go to

school every day. "If they can go to school, why

can't they live in a family?" Nobbie asked.

Living with a Birth Family
Who: Chad Roberts
Age: 13 years old
Support: MRWP; Natural Support Enhancement a flexible service for getting people out
Chad Roberts wit/1 friend Charlie Coleman,
working on leisure and community skills. into the community.
enerally a happy kid, Chad Roberts lives at home with his
Gmom, Kellie Roberts. Chad has autism, is nonverbal and significantly delayed in all areas. Communication has been a large problem until recently, when he got a device that helps him communicate with the world. Roberts feels that home is the right place for her son to live until he is older, but admits she wouldn't be able to raise him alone if it weren't for the Natural Support Enhancement. "Because of Charlie Coleman at the Emory Autism Resource Center Family Program, we've had success in planning Chad's day so he can be successful," she explained.
Since he's had support from the program at Emory, Chad has followed a structured schedule. When he gets home from school, he refers to a picture schedule which is easier for him to process than words. If Chad decides he doesn't want to do an activity that's on the calendar, he is able to replace it with other pictures that symbolize what he would prefer to do. "He has done beautifully with his picture schedule," his mom said. "He's almost independent and will complete 'Grooming Boot Camp' this week." Ayear ago, he couldn't complete the most basic daily living tasks.
Chad is also working with Kim Pisor, an independent behavior specialist, at home and at school. "We still deal with behavioral problems; he has rages, and sometimes I know the trigger and sometimes I don't,"
Roberts explained. Using swimming, horseback riding, gymnastics and country music videos as rewards have helped her son make behavioral progress. He's even earned several rewards at his school this year for "Most Improved Student" and "Student of the Month."
"He's going to camp this summer; it will be his first time for overnight camp," Roberts said, excited and nervous at the same time. "We've set up a social story with pictures from the camp and have made a calendar for everything so he knows when he's going and when he's coming home."
Roberts works part time at a group home but doesn't think now is the time for Chad to live in that kind of setting. "They're wonderful folks, and I see Chad living there when he's older, but he's in school right now. Our goal is for him to finish school while he's here at home," she commented. "While Chad has very complex issues, he's my son - he's part of a family and we love him." According to Roberts, her son enjoys learning, going to school and even waiting for the bus. Although frustrated at times, he's proud that he's learning how to take care of himself and is responsive - rewarding praise with hugs and smiles. "He's doing better now," she stated. "This is a team effort though. I couldn't have done this without the waiver. Chad probably would be in an institution if I didn't have the help I have."
www.gcdd.org 1 3

Living with an Adopted Family
Who: Christopher Hanes
Age: 15 years old
Support: Katie Beckett Waiver families with incomes too high for Medicaid receive funds for Christopher and his mom share children with chronic medical many interests, including travel. conditions and disabilities
Christopher Hanes' birth family made a tough decision - a decision to find another family for Christopher who has Kabuki Make-Up syndrome, a seizure disorder, a heart defect and mild autism. Evelyn Hanes, a single 37-year-old woman also made a decision - a decision to make a family and a home for herself and for Christopher.
Even having contemplated adopting a child with physical disabilities in the past, when the opportunity of adopting Christopher appeared to Hanes out of nowhere, it was quite shocking. "It took me about a month to decide whether it was the right thing to do and what was God's plan for me and Christopher? Did this meet my needs and not his needs?" she remembers. "I tried to look at it in a way to know if it was the right thing for both of us."
If the adoption had not worked out, Christopher may have been one of many other children with disabilities who end up in impersonal institutions. However, after miraculously working out insurance issues that seemed impossible, Hanes took her nine-month-old son home and never looked back. A nurse, she was able to give him the daily care he needed by working weekend shifts and staying home with him during the week until he was ready to go to school some four years later.
"I had a girl that took care of him for a year [on the weekends] and then when she went off to school, her parents became like a second set of parents," she said. "They are very special to us."
Several years after the adoption, Hanes applied for the Katie Beckett Waiver. It helps cover medications and health treatments that her insurance doesn't cover. "I haven't had to spend money on medication for several years, and that is really a blessing," she commented.
Now a teenager, Christopher enjoys traveling, swimming for the Special Olympics and is a food connoisseur of sorts. According to his mom, his charm will get him far in life.
Christopher, who was not yet an eighth grader, was not invited on the eighth grade endof-year field trip. On the day of the trip, he convinced the teacher in his sweetest voice to let him go with the class. Soon after, his mom received a phone call from the teacher letting her know they were on the way to Stone Mountain. Christopher enjoys spending "He talked his way right into it," Hanes laughed. Hme with Iris granddaddy. "And he had a ball and he climbed a mountain!
"We have a great life," she said. "I can't imagine him being in a situation where he can't just get up and go. If I woke him up and told him we were going on vacation, he'd be in the car before I could pack."
1 4 Making a Difference Summer 2005

The main challenge to implementing the plan, according to Nobbie, is building a good provider community. But she has faith that the state agencies will work hard to do that. "We feel (OHR) Commissioner (B.J.) Walker is committed to seeing this plan through. So is Gwen Skinner and (Director of Developmental Disabilities) Steve Hall."
Stoneman hopes people realize how important the Children's Freedom Initiative is. "These children are the future of Georgia. We need to figure out what these families need to make sure their futures are bright."
A Conversation
with GAO's
Ruby Moore
By Valerie Meadows Suber
What does it really mean to a child not to have the presence of even one parent who is consistently there to love them in a home that is a safe place, a sanctuary, a place where a child can learn and can make mistakes, and where people love you just because you are you?
In an interview with Making a Difference magazine, Georgia Advocacy Organization (GAO) Executive Director Ruby Moore spoke on the need for a Children's Freedom Initiative Summit to end the institutionalization of children in Georgia. "If not now, when? If not us, who?" she asked.
Can an institution ever be a suitable substitute home for a child?
Astaff member just brought home a baby from an orphanage in Russia. She was growing up not knowing how to feed herself - how to use a spoon, knife or fork. She didn't know what it felt like to eat a meal with a family. She was always fed by staff who plopped a metal tray in front of her and fed her. When staff left they went home to their families. This child didn't go home with the staff.
There is nothing within an institution that will give children the love; there are staff there that care but they don't take these children home where they can learn how to do sim ple things and make simple choices.
What triggered passage of the Children's Initiative Resolution (HR633)?
Locking people up because of a disability. This needs to be changed - this is one of the most urgent issues today. The resolution came about because we felt this needed to be brought to the attention of the legislature.
How did the Children's Initiative Resolution evolve into the Children's Freedom Initiative?
Three federal partners, the Georgia Advocacy Organization, the Governor's Council on Developmental

Disabilities and the Institute on Human Development and Disability, got together and said we need to bring the children home - we thought about the words that describe what we are doing -we are freeing children who have been institutionalized.
What is the intended outcome of the Georgia Children s Freedom Initiative: A Summit For Change and beyond?
To bring home the children of Georgia who are currently institutionalized and change the way we t hink about supporting children and their families so that we don t send any more kids to institutions.
Beyond the August summit the Children s Freedom Initiative will be a major focus in Georgia for five to 10 years or however long it takes.

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

Leaving an Institution
Who: Elizabeth Rhodes
Age: 19 years old
Support: MRWP - a home and communitybased waiver for people with developmental disabilities

The Children s Freedom Initiative: A Summit For Change will offer what program highlights?
People telling their own stories of how they personally came to be institutionalized and ultimately freed. From a family perspective, what it would have taken or what it did take to bring their child home.
We have nationally and locally known speakers. We will have representation from Georgia s First Lady Mary Perdue s Children s Cabinet. Harriet McBride-Johnson, internationally known activist who was in an institution as a child will come. We found a three-year-old at Central; a three-year-old at Gracewood; a baby at

A

lmost four years ago, Elizabeth Rhodes went from living with her family to living in an institution a few hours away. Elizabeth was having behavioral problems that required professional attention. [The institution] had a behavior specialist that worked with her on self-care and

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

Cheryl Rhodes.

However, when Elizabeth was approved to receive Medicaid

through the MRWP last April, the search for an appropriate community

placement began. She was on the list for years! Rhodes emphasized.

Egleston in the intensive care unit. All of these babies

According to Rhodes, it was a tedious process to find a provider for her

have families that want them.

daughter. I keep joking that the highlight of 2004 was getting

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

Elizabeth settled, she said. It took a lot of time to get the pieces in place.
This past December, Rhodes moved her daughter, who has moderate

Why is this issue important to you?

mental retardation and a seizure disorder, out of the institution and

I am a mom to three daughters; one has a

into a community setting. Since she moved back into the community,

disability. I feel that no child should be institutionalized because they have a disability. Any person who would have to spend a day in an institution would be shocked beyond comprehension. In institutions kids stop crying, they stop walking and they stop talking. This happens to people that don t grow up with at least one loving adult who was there to create a loving home. This is something most people cannot fathom .

Elizabeth s problems have noticeably decreased. She s so happy all the

time! her mom said. She is more involved in her community and has

more choices for leisure time activities. [Her

caregivers] value her as an individual instead

She s so happy all the time! . . . She is more involved in her com-

of a consumer.
a Elizabeth was placed into residential
home operated by the Consumers Care Corporation. She lives with a couple, another

All you have to do is picture your child in that setting and I cannot.
What will it take to make it possible for all Georgia children to be in permanent homes

munity and has more choices for leisure time activities.

consumer, and the couples young child. According to her mom, Elizabeth loves her new home where she gets to go out to dinner, Home Depot, or wherever the family goes, and

with a family?

she especially enjoys playing the big sister.

Citizens need to know that there are

Rhodes is appreciative of the fact that

children growing up in institutions. Policymakers need to recognize this too. We already have everything we need to make sure children currently residing in congregate facilities live with families and that in the future no child will be institutionalized. Thats the outcome we want, and we want it quickly, but we need to find the political will.
When you look at this issue through the eyes of a

Elizabeth s live-in companion takes the role of a mother. She takes pride in Elizabeth s accomplishments, she said. It also turns out that Elizabeth s caregiver used to be a special education teacher and is comfortable with being a liaison for Elizabeth, her school and her mom.
Rhodes admits that it wasn t easy parting with her daughter in the beginning, but things are much better now. It was very hard at first,

child its clear: why wouldn t everybody be coming home

she remembered. There is good communication though, and a sense of

to live with a family?

trust. I really feel like they have my daughter s best interest at heart.

www.gcdd.org 1 5

M any parents of children with disabilities feel frustration that there is not enough out there for their kids to do. Other parents make a sport of finding recreation for their children.

Chessa Birrell earn ed the Small Craft badge by giving others instruction.

Dr. Cheryl Marko, a parent of a child with Spinal Muscular Atrophy in Acworth, GA, knows a lot about recreation-hunting. Her daughter, Chessa

Birrell, plays soccer, hockey and football, she sings

and dances, is a Girl Scout and has a blast at

different camps throughout the summer including

Girl Scout Camp, Aviation Camp at the Fernban k

Center and Summer Safari Day Camp at Zoo Atlanta.

Most of her sport activities are specifically

designed for kids with disabilities but others are

inclusive - that is,

" ... many parents feel that kids with they weren't
necessarily designed

mixed abilities who play together

with disabilities in

are better prepared for future

mind but the leaders have come up with

integration into the community."

ways to make sure she can participate.

A License to Participate
Many parents feel that kids with disabilities who play in a mixed abilities setting are better prepared for future integration into the community. However, many of them don't realize that there are inclusive activities for their kids in their communities.
Parents should know that the Americans with Disabilities Act (ADA) prohibits discrimination on the basis of a disability. According to the National

Center on Physical Activity and Disability (NCPAD), this means people with disabilities have:
1. The Right to the Most Integrated Setting
2. The Right to Participate: The right to register and participate in recreation or leisure activities so long as the participant meets "essential eligibility requirements" required of all registrants such as registering before the program is full and paying the same fee that others pay. Other essential eligibility requirements may be the ability to serve in a tennis match or the ability to swim if the participant falls off a kayak.
3. The Right to Reasonable Accommodations: Reasonable accommodations (modified play rules or extra staff for management of the activity) should be provided by the activity organizer to enable participation as long as the accommodation does not result in an unfair competitive advantage.
4. The Right to Adaptive Equipment
5. The Right to the Same Fees: No sport or recreation provider shall charge a higher fee, or surcharge, for the cost of accommodations for a participant with a disability.
For a more complete list and explanation on the rights to recreation, visit www.ncpad.org.

Don't be a Lonely Hunter

Arcl1ery instructo r Barb Bonham pulls the arrow back as Chessa Birrell aims and presses the release button at Girl Scout Camp.

The first place for parents to start looking for inclusive activities is with their children's interests - just like most parents would. Family-

1 6 Making a Difference Summer 2005

With a few modifications, Birrell (center) can enjoy t/1e same activities as the other Girl Scouts at Drea m Catcher Day Camp.

Photos by Harris Hatcher.

focused publications feature camps and activities for children on a regular basis.
Parents who network with other parents and disability professionals often find what they need for their children without as much hassle.
"I do a lot of networking in the disability community," Marko said. "Someone will mention something, and I'll jot in down and file it away for future reference." She also finds out about camps that are relevant to her daughter's disability from parents and speakers at Muscular Dystrophy Association clinics and Spinal Atrophy conferences. An organization called Parent to Parent of Georgia offers an online forum for people to discuss a large range of topics related to their kids and a place to network at www.parenttoparentofga.org.

Recreation Tactics
According to Marko, two tactics matter the most once she has sighted the target activity: 1) Be open and honest about a child's abilities and disabilities, and 2) Don't take "no" for an answer.
"Some organizations give an immediate response - 'of course she's welcome' and with others - you have to work at it," Marko said. "As time moves on and people become more aware, we get better accepted. With Fernbank, there was no hesitation ."
www.gcdd.org 1 7

For several years, Chessa has attended day

camp with her Girl Scout troop. The counselors

were aware that this year, her age group would be

required to do physical activity to earn a Small

Craft badge. Jeanine Adams, the canoeing

instructor at Dream Catcher Day Camp, contacted

"Through their [mixed abilities]

the Girl Scout Council of

performances, they, in tum, demonstrate

Northwest Georgia to

to our audiences that differences can not only be overcome, they can be

have the badge modified so

complimentary and celebrated."

that Chessa could earn it

by giving instruction instead of paddling and

throwing life rings. These modifications were made

without Chessa's mom ever having to make a

suggestion. "We don't turn anybody

away," said Kristie Walden, director

of the day camp.

The Georgia Dance Conservatory

in Marietta, GA is also very

accommodating. "We were inspired

to offer mixed ability classes after

Alex Spitzer, who is a wheelchair

dancer and choreographer, along

with an able bodied dancer,

performed an original piece of his at

one of our recitals a few years ago,"

said Lisa Toups, artistic director and

owner. ''Through their [mixed

abilities] performances, they, in turn,

demonstrate to our audiences that

differences can not only be

overcome, they can be

complimentary and celebrated. Every

year Chessa's been in our recitals,

her number has been one of the

most appreciated in the entire

Lindsey A rmstrong and Chessa Birrell recently perform ed a choreographed recita I together.

performance." Another community organization across the state of Georgia that offers inclusive activities is the YMCA. Each branch is independent so the

programs are not the same across the board, but

they share the same philosophy - to be open to

INCLUSIVE
RECREATION
Por ~iclS
ALTA Tennis "
" ~ Boys & Girls Clubs ..
" .. ~ .. .. Boy & Girl Scouts "
City/County Recreation Programs
Gymnastics/Exercise Centers
Martial Arts Centers
YMCA
and to serve people of all abilities. "We try to go out of our way to accommodate
any and all people that we come into contact with," said James Mercer, vice president of communications at the YMCA of Coastal Georgia. "It's not as much a set program as [existing] programs that we adapt to the particular needs of the individual." Delaine Truman of the Northwest Cobb YMCA tries to develop classes for specific disabilities, like autism and Down syndrome, but does as much as she can to accommodate anybody for the other 28 children's programs her branch puts on each year.
The Atlanta Lawn Tennis Association (ALTA) provides free wheelchair instructional clinics for children in the spring and fall. Wheelchair tennis rules are the same as standard tennis rules except that the wheelchair tennis player is allowed two bounces of the ball. Kids 16 and up are able to join a mixed abilities league in the summer. The league is comprised of doubles matches where each team includes one player in a wheelchair.
Marko explained that looking for things her daughter can be involved in is sometimes tiring and discouraging, but well worth the effort. "If you think the answer is no, you might stop asking," Marko advised. "It's an attitude of let's see what they can do."

1 8 Making a Difference Summer 2005

After Leaving Institution,
Man is Living His
American Dream by Katie Bishop

T welve years ago, a court decision ordered Alan Duvall to leave the institution he had called home for the past 19 years. While he did not advocate for himself, Alan understands the importance of living in the community and believes the court decision was the best thing that ever happened to him.
Currently, home for 33-year-old Duvall is a personal care agency residence in Chamblee, GA. He spends his days working at the International House of Pancakes, playing video games, going to the mall, listening to music and attending church. He takes the bus to and from work, spends time with his family in Gwinnett, and has a witty sense of humor. Cheri Mitchell at disABILITY LINK said that not only is Duvall a fun loving guy, but "a great dancer who can do the worm!"
With his good humor and strong heart intact, Duvall described his moving out into the community as a positive experience that gave him the ability to control his own life. Duvall explained control over your life is the hardest adjustment; however, it is the most fulfilling part of living within the community. For example, Duvall chooses to pay his own rent. He believes that paying rent, making his own choices and working make him more of an American citizen than when he lived in the institution .
At the time, it was extremely hard for Duvall to leave the institution, the only home he really knew. However, he fully believes in letting people lead their own lives in a community of their choice. He spends much of his time advocating for others and sharing his personal

experience as a message that if he can do

it, anyone can. Duvall also notes that

"communities are much more cost-

effective."

Duvall said that while his personal

inspiration comes from God, he hopes

that he can be an inspiration to others by

sharing his story and making people

smile. A graduate of Berkmar High School, Duvall has spoken on several occasions to

Linda Pogue and A lan Duva ll at the sixth annual People Fi rst Conference.

groups of people with and without

disabilities about the importance of living

in a community. Duvall said a dream

come true "was speaking at the University

of Georgia, I love the Bulldogs." He

believes his

calling is public
speaking and #Duvall believes paying rent, making

enjoys fulfilling his purpose

his own choices and working make him

while making a more of an American citizen . . . "
difference in

others' lives.

Once out of the institution, finding

a place to call home was difficult. He

moved several times all over the state

until finally settling in Chamblee. He

said the assisted living home he is in now is "the best one by far!" Duvall has been living with his personal care assistant, Edward Williamson, since 1998.

*

Williamson works hard to let Duvall live

an independent life and make his own

decisions.

It is because of Duvall that

Williamson has stayed in this

profession. Williamson admires and

respects all that Duvall has

accomplished, saying, "He is my

hero."

19

D isability advocates from across Georgia resorted to civil disobedience in their efforts to meet with Governor Sonny Perdue on the last day of the four-day Long Road Home March II June 22 in Atlanta.

Advocates marched from Th e King Center to the Georgia State Capitol in A tlan ta.
A tlan ta photos by Harris Hatcher.

The march marked the sixth anniversary of the Supreme Court's landmark Olmstead decision which found that states were required, under the Americans with Disabilities Act, to provide services to people with disabilities in the most appropriate integrated setting. Marchers hoped their action would call attention to the
continued need for funds and legislation mandating more communitybased living to hasten the end to the inhumanity of institutionalized existence.
Advocates were disappointed the governor had not followed through on promises he delivered after last year's Long Road Home March, according to Samuel Mitchell, one of the leaders of the march.
"Governor Perdue said he or someone from his staff would meet with us four times a year. Sonny Perdue - do what you said you would do!" Mitchell exclaimed.

20 Making a Difference Summer 2005

While the governor's office did meet with disability advocates once following last year's march, no further meetings followed. Zen Garcia, march leader and ADAPT organizer, couldn't understand why the governor did not meet again with the advocates. "We're just as important as all the other citizens in Georgia. Our issues are everybody's issues - anyone can become disabled," he said.
After a rally at The King Center, the group of about 100 disability advocates marched to the Capitol for another rally outside. The group then moved indoors, where Abel Ortiz, the governor's policy adviser for health, human services, juvenile justice and veteran's affairs addressed the group in the rotunda.
Ortiz revealed he was unable to attend earlier march events in Augusta and Athens because he was meeting with the Center for Medicaid and Medicare Services to try to reform the process in Georgia. "If it's better to live in the community, why don't we pay for it with Medicaid dollars?" he asked. As part of the reform effort, the state is trying to make costs more predictable, and will also include quality rankings for doctors. "This will help people make better decisions based on quality and cost," he explained.
In addition, Ortiz is hoping to take money currently spent on institutions and move it to community care options. "We are committed to working to get more people into the community," he stated.
Ortiz was then asked when all these reforms would take place. "We don't know the dates for implementation," he said.
""'Our issues are everybody's issues
- anyone can become disabled."
March Leader Zen Garcia
Advocates responded by chanting, "Set the date! Set the date!"
Kate Gainer, another march leader asked, "Where is the governor?"

Ortiz

responded,

"We are busy

doing the work

we need to do to get people out of institutions."

Marchers then began chanting "We want Sonny

Perdue!" and "Sonny Perdue, where are you?" as

they approached the governor's office. Several

people who use wheelchairs positioned themselves

outside the governor's door. The crowd chanted

"Free our people now!" and "Get us out! Keep us

out! Don't put us in!" while hoping for an

audience with the governor.

"We are busy doing the work we need to do to get people
out of institutions. "'
Governor's Policy Advisor Abel Ortiz

After 20 minutes of chanting and blowing

whistles, one demonstrator, Gwen Evans, of Atlanta,

was taken away in handcuffs after falling down in

front of the governor's doorway. She was

subsequently released without charges being filed .

Ten minutes later, the civil disobedience paid

off when the governor's office set two appoint-

ments, one July 5

and one October 5

to meet with the

advocates to

discuss their

demands (see

sidebar at nght) .

The march

began June 19 with

two days in Augusta

with rallies and a

trip to a state-run

institution .

"Marchers tried to

Marchers ra llied and met wit/1

visit residents at

the mayor in Athens.

Gracewood Regional

Athens photos by Bob Herri n.

Hospital, but staff

www.gcdd.org 2 1

moved the residents inside and closed the doors," according to march participant Mark Johnson, director of advocacy at the Shepherd Center.
The march moved to Athens June 21, where participants rallied and met with Athens Mayor Heidi Davison. The day ended with a reception and candlelight vigil at the Institution for Human Development and Disability, which is housed in the former institution for children, Rivers Crossing.
Parents of children who lived at Rivers Crossing recounted how they were only permitted to see their children on weekends and how hard that was on their families.
This year's march was dedicated to Georgian Elaine Wilson, one of the Olmstead plaintiffs, who
died last year. Fellow plaintiff Lois Curtis was honored for her role in the groundbreaking decision with an award during the rally in Atlanta, which was attended by self-advocates from all over Georgia, and even from other Southeastern states.
Marcl1 activities in Atllens included an Americans witll Disabilities Act celebration and a candlelight vigil at the In stitute for Human Development and Disability (above). Kate Gainer made the wishes of the disability community clear to the governor's office (right}.

State Senator Da vid Adelman (D-Decatur} addresses marchers outside tl1e Capitol.
Matthew Barnes, of People First in Albany, marched in the first Long Road Home March last year and came again this year. "We wouldn't miss it, being with other individuals for a single cause," he said.
'We need more awareness and
support for people who are in
institutions. Everyone deserves
the same quality of life . . . "
March Participant Peggy Chavis
Dawn Alford, who lives in Carroll County, but currently attends Georgia Tech, said, 'Tm a supporter of MiCASSA because it enables me to live independently." MiCASSA is the Medicaid Community Attendant Services and Support Act that would provide support to people with disabilities so they could continue to live in the community, instead of in an institution or nursing home.
Provider Peggy Chavis, who is visually impaired, came from Athens, where she is director of the Multiple Choices Center for Independent Living. "We need more awareness and support for people who are in institutions. Everyone deserves the same quality of life. I'm here to help create awareness that will hopefully make a difference."
The Long Road Home March II was sp_onsored by the DeKalb Chamber of Commerce, DisABILITY LINK, Georgia Advocacy Office, Georgia Voices That Count, Governor's Council on Developmental Disabilities, Handicapped Drivers Services,. Institute on Human Development and Disability, People First of Atlanta, Statewide Independent Living Council and Walton Options.

22 Making a Difference Summer 2005

Olmstead:
How Far Has GEORGIA Come?

hen Atlanta Legal
Aid attorney Sue
Jamieson first met
Lois Curtis, she had no idea her
new client would take her all the
way to the Supreme Court.
The case, in which Curtis, then later coplaintiff Elaine Wilson, sued the state to receive services in the community instead of an institution, became famous across the country as the Olmstead decision. "Not in our wildest dreams did we expect the case to go to the Supreme Court," she said.
The issue that caught the eye of the Supreme Court was a clarification of a clause in the Americans with Disabilities Act, which states people with disabilities must be served in the most integrated setting available. The state of Georgia argued that it had no obligation to serve Curtis and Wilson in the community, while Jamieson argued forcing Curtis and Wilson to live in an institution in order to receive services was discriminatory.
The Supreme Court agreed with Curtis and Wilson, and the Olmstead decision was born.
Six years later, states all across the country, including Georgia, are moving people from institutions into their communities to comply with the decision, but it has been a slow process.
Jamieson said instead of moving small groups of people into the community, she hopes Georgia will create a plan to move everyone who is eligible and wants to move into the community.
Currently, there are about 1,096 people with developmental disabilities living in state-run

Lois Curtis was l1 011ored fo r her role in th e Olmstead decision du ring the Long Road Hom e Ma rch II. Th e march was dedicated to co-plaintiff Elaine Wilson.

institutions and

intermediate care

facilities. Georgia's

Division of Mental

Health, Develop-

mental Disabilities

and Addictive

Disease has helped

310 people move

into their commu-

nities as a direct

result of initiatives funded to implement Olmstead.

"Georgia's

Department of

Human Resources is Currently, there are about

doing all it can with available dollars so

1,096 people with develop-

people who live in institutions can

mental disabilities living in

move to the

state-run institutions and

community," said Dr.

Steve Hall, director intermediate care facilities.

of DHR's Office of

www.gcdd.org 2 3

Dr. Steve Hall, director of the Office of Developmental Disabilities is working to ens ure supports are in pla ce across Georgia so people who wan t to move into their co mmunities ha ve what they need to make a s uccessfu l tra nsition.

Developmental Disabilities. "The key to success is to build an effective, efficient and excellent community provider system.
"Institutions would not be needed
if the community system was as good as we want it to be," he said.
Jamieson said that without good providers, "It will be an ongoing challenge to keep people in the community."
Hall stresses that successful implementation of Georgia's Olmstead Plan (which can be found at

http://dhr.georgia.gov - type "Olmstead Plan" in "Search" box and press enter.) depends on a number of factors, including separating Georgia's waiting lists into those who live in the community and those who live in institutions and ensuring money follows people from institutions to the community.
Jamieson agrees that money must follow people. "Nothing will be solved until states redirect money away from institutions," she said.
Hall described Georgia's current funding of services like this: "Imagine if you get your paycheck and $200 is missing," he said. "Your boss says he gave the money to the grocery store where you normally shop. So you go there to shop, but they say to you, 'We already have your groceries picked out for you: You may get some things you don't need or want and not get some things that you do need."
Hall said because of the way Georgia's funding is structured, this scenario is happening daily to people with developmental disabilities, especially those who live in institutions. To combat this problem, the state is rewriting its Medicaid waiver and plans to submit it to the federal government in December, in hopes that it will be accepted and put into practice in July of 2006.

24 Making a Difference Summer 2005

Sue Ja mieson is concerned the pace of implementing Geo rgia's Olmstead Plan is too slow.

The new waiver will allow people with developmental disabilities to have the power to choose what they need and want, not what someone else thinks they need. If accepted, the new waiver will help more people move from institutions into their communities because the people will have more control over how their funds are being spent.
In the meantime, a change to the current waiver went into effect July 1, 2005 that will grant waiver recipients a little more flexibility to selfdi rect their services.
"It's the natural way in a capitalist democracy that people should be able to choose what supports and services they want. When people can freely choose their providers, that can create new services and supports in communities that can benefit everyone," Hall explained.
Services would be determined based on a person-centered planning process that involves the person with a disability and members of his circle of support, such as a family member, doctor, friend, etc. Some planning has already been done for people who are living in institutions.
Jamieson feels person-centered planning is a step in the right direction, but that many of the resulting plans are too vague. "They should be defining what supports are needed and who will develop them . The plan doesn't say when or how it will be implemented," she said.
According to the state's Olmstead plan, after the planning process, " .. . the individual should receive services as specified in the assessment report or be placed on the waiting list for those services." However, Jamieson is concerned that this is not happening. Instead, she believes people are participating in planning sessions, but never find out when or if their plan will be implemented.
"The state is obligated to serve people in the

community who want to live in the community,''

Jamieson said. Since the Olmstead decision, she

has brought three lawsuits on behalf of people in

institutions who were waiting for services, and after

filing the suits, each client was served in their

communities.

As people wait for services, state institutions

and communities are starting to work together to

integrate people with developmental disabilities

more fully into their communities. "Someone may

work all day at a job in thei r community, but live in

the institution," Hall commented.

While this scenario may not exactly fit the

goals of Georgia's Olmstead Plan, it does set the

stage for people who are living in institutions to

begin to develop natural supports in the

community, which are vital to people as they move

permanently into their communities.

''The enemy is loneliness. Being in the

community is not the same

as participation in the
community," Hall stressed. "Families are afraid their brother,

The partnership between the institution and

sister, son or daughter won't be

community support systems can also help family members overcome their fears about their loved one

safe in the community."
Director of the Office of Developmental Disabilities Steven Hall, Ph.D.

living in the community,

which Hall said is one of the biggest challenges to

implementing the Olmstead plan.

"Families are afraid their brother, sister, son or

daughter won't be safe in the community. We need

to assure them their relatives will receive 100% of

the same benefits they get in the institution in the

community and that they will be safe, happy, have

friends and competent help and support in the

community."

Hall thinks a few more years will pass before

everyone who wants to move out of institutions is

served, but the state will continue to develop a

good network of services and natural supports. "We

want to make sure people have good choices in

their communities so they don't end up in private

nursing homes," he stated.

"We don't want people to spend their lives

surrounded by people who are paid to be around

them. We want them to have all the gifts and joy

we take for granted in ordinary community life,''

Hall said.

www.gcdd.org 2 5

Karen Diamantstein is a 40year-old single mother of a child with autism who is nonverbal, has no independent toilet skills, rarely sleeps through the night and has some behaviors that require constant monitoring. His fa ther takes him every other weekend and for dinner three evenings a week, which is her only respite. She is physically and emotionally overwhelmed by her son's needs, but said his smile and the sound of his laughter give her reason to get out of bed in the morning.

Woman Fights for Appropriate Education for Son
By Karen Diamantstein

M y son, Michael, was born June 21, 1995. Following his autism diagnosis in 1997, we established a discrete trial teaching program in our home. We hired a team of therapists who were trained to implement his uniquely tailored program. He made steady progress and, though he struggled to produce speech, his strong visual and motor skills showed promise. His ability to interact with teachers and therapists developed nicely. We continued our home program, plus private speech and occupational therapy, until we ran out of money.
In 2000, Michael entered The Model Classroom (TMC) at Faith Lutheran. Despite his ability to adapt and enjoy his play with other children, his functional communication skills were not improving. The school's director, Marian Joiner, told us TMC could not provide enough intervention to meet his needs and suggested public school so Michael could have daily access to therapy services.
Marian attended our first IEP meeting and spoke about Michael's need for daily therapy. She suggested he was an ideal candidate for errorless learning and discrete trial teaching of specific skills. She also emphasized the need for professionals who were qualified to teach and use PECSTMand augmentative communication devices so Michael could develop a functional communication system.
It was my understanding that the IEP committee would follow these suggestions, but little of what Michael needed was ever provided by the Cobb County School System. I am grateful that, after a bumpy start in a terribly inappropriate placement, Michael eventually joined a wonderful classroom with a loving and caring teacher. But that didn't ensure the provision of appropriately designed educational programming and services.
Designing a successful teaching program for Michael requires a coordinated team of experienced specialists. He has unusual scatter in his profile of skills and learning styles, making implementing a good discrete trial teaching program challenging. Any program lacking the required level of frequency and intensity will not be sufficient.
Since the school system became responsible for Michael's education, various skill regressions have become obvious to everyone who knows him. The concepts presented to him in school seemed to get simpler, and I felt school employees wanted me to accept his limitations and be satisfied with their well-intentioned efforts.
Michael has lost skills because he has not used those skills in any consistent, well-managed educational program. Discrete trial teaching, when properly implemented, has been documented to be effective for him.

I provided our school system with evaluations, documentation binders and tapes containing data and video of Michael demonstrating mastery of many skills no longer apparent. I encouraged school system employees to review this history and explore why he lost these skills.
I have never asked for anything that even begins to resemble the "best" services money can buy in regards to Michael's IEP. I have been forgiving when mistakes were made by system employees. After years of struggling with the system, I have no reason to believe that future services would be based on his needs. Our situation may represent a growing problem in public schools.
In spring 2004, I had an opportunity to place Michael with an educational specialist who managed our first intervention plan. This plan showed more promise in its ability to help Michael master cognitive functions than any instruction designed by the school system. I asked the system to fund this program over the summer and until Michael could be transitioned to an appropriate classroom placement. The request was denied.
I think Michael should be in school because it adds a rewarding dimension to his life. However, I have no way to verify the appropriateness of his education, and he has no way to tell me what happens during his day. Without unlimited and inconspicuous opportunity to observe him at school, I am at a disadvantage and can hardly participate as an equally knowledgeable member of his IEP committee.
Given Michael's profile, I doubt any competent educator or health care professional would disagree that he needs a full-day, year-round service program. Further, a service plan that fails to provide sufficient intensity or consistency by qualified instructional staff is, at best, limiting Michael's potential and, at worst, interfering with his ability to derive educational benefit from his services.
If I lived in some other states, my school system could place him in a comprehensive, full-day, year-round program at no expense to me. I don't want to move away from friends and family, but I'm considering it. He deserves appropriate services, and I need to work with school administrators who will explore ways to meet his needs.
Cobb County School System's three years of failure to design and implement an appropriate educational plan for Michael motivated me to withdraw him from school. I felt he would be unlikely to make any meaningful progress in the absence of appropriately targeted educational services.
Michael's educational needs have been neglected since he entered public school in 2001. I believe the system's efforts to "not leave Michael behind" are in need
of scrutiny.

2 6 Making a Difference Summer 2005

Joey World
By Renee Pullen

Eight years ago our family eagerly welcomed the adoption of two special boys. The youngest, Joey, was a beautiful, curly haired four-yearold. We were told that Joey was globally developmentally delayed. We thought that

stressed to the highest point and often goes into a full rage. He slaps and kicks any part of my body that he can reach. He snatches my hair, spits on me and urinates in his seat. I have had numerous narrow escapes while driving.
While Joey is at school, he is restrained for most

with love and the proper educational care Joey could catch of the day. While his teachers are willing to learn how

up on what he had missed in his early developmental

to best reach Joey, there aren 't any places nearby that

years. If we had seen the big picture in the beginning we offer training for autism . I probably know more about

would have run as fast as we could to the far corners of

autism than anyone in this county!

the earth. Instead, we now find ourselves running to the

In May, Joey experienced a rage at school and

far corners in search of help for Joey and so many others

attacked his teacher. As a result, he was sent to Central

like him with families who are in crisis. Joey's present

State Hospital, where doctors warned us to fight to get

diagnosis is autism and mental retardation . In our rural

him out or he might regress. And he did start to regress -

area in Southwest Georgia, we have no support or

at home he wears pull ups at night, but in the hospital, he

overnight facilities available. Just finding a respite

had to wear them all day. He was kept medicated most of

provider for a child like Joey is a major challenge - we've

the time, and just wasn't himself there.

been through six since Christmas. Our family has literally

Luckily, Joey was accepted by the Marcus Institute in

shut down our world and we live in

Atlanta for a 16-week program that will

what I lovingly refer to as "Joey

help him learn how to better deal

World."

with his rages. I'm looking for good

Joey goes to bed about 7:30 PM . The first wake up is around midnight, then around 2:00 AM

Our family has literally shut down our world

results from Marcus. Unfortunately, since it is a day prog ram , he will have to stay with a host family while

and then again between 4:30 and 6:00 AM . He is turning on the

and we live in what I

he's there instead of at home with us. We'll only be able to see him on

lights, running the water in the bathroom, or watching Barney on

lovingly refer to as

weekends. We'll get training there too about how to handle his rages.

the television. I have learned to sleep with one eye open in order

"Joey World."

We're worried that because we don't have any follow-up care available

to redirect Joey back to bed so

nearby, he might have trouble

that he and I can get a few hours

retaining what he learns at Marcus.

of sleep before the new day begins. Someone has to

My husband and I take turns spending time with our

get up immediately or the damage Joey can do in a

other children and new grandson. Joey's brother also has

short amount of time is shocking. We put a lock on

some learning disabilities, and we are not able to spend as

our pantry to prevent boxes of cereal and any other

much time as we'd like with him because Joey demands so

food items from being poured all over the bar and

much of our time. We are physically and mentally drained

floor. Joey then moves to the refrigerator where he

and have little time for each other.

opens jars of condiments or leftover food and digs his

We sacrifice ourselves daily for our love for this

hands or utensils in the jars.

special child. He is the love of our life, and we absolutely

Once we dress Joey for school, he has to be watched don't want to put him in an institution. All we need to

closely or he will strip naked in seconds. The ride to

keep him home with us is some respite care once in a

school is usually manageable. When we arrive at school I while so we can spend time with each other and our other

hold my breath as he and his brother walk to the outside

family members and some follo w-up care after he finishes

door of his classroom. If he sees other students,

at the Marcus Institute.

especially females, he will run after them to pull their hair,

Joey did not grow in my womb, but he certainly grew

expose himself or curse at them. I verbally than k God

in my heart, and I'm afraid his needs will one day be

that we made it and pray that Joey can cope through the

beyond what we can do at home without help .

day. The afternoon ride home is usually chaotic. Joey is

Renee Pullen and her husband adopted Joey and his brother eight years ago and live in Blakeley, GA. Pullen tea,ches at the local elementary school during the day, and she and her husband take turns watching Joey in the evenings and on weekends.
She feels if she could have
respite care just once in a while, she would be able to keep Joey at home. Currently, none is available in her area.

www.gcdd.org 2 7

AUGUST
August 20 "All Children Are Special" Equipping for Life! A Resource Workshop and Family Fun Fest for the Developmentally Challenged Child
Brook Run Auditorium and Park Chamblee-Dunwoody Contact: Helga Moore, 404-429-5901 or Norma Stanley, 170-873-3245
August 25 ~ 26 Children's Freedom Initiative: A Summit For Change
Atlanta Community Food Bank Sponsored by Georgia Advocacy Office (GAO), the Governor's Council on Developmental Disabilities (GCDD) and the Institute on Human Development and Disability (IHDD)
SEPTEMBER
September 21- 23 Alliance for Full Participation's National Disability Summit Washington D.C.
www.allianceforfullpartidpation.com
September 29 - October 1 Kennedy Center's Accessibility Conference
Scottsdale Center & Mesa Center for the Performing Arts Scottsdale, Mesa, Arizona Eileen Bagnall at ARTability at 602-757-8118 or 520-631-6253

OCTOBER
October 7-9 Special Olympics GA State Fall Games
Albany, GA www.spedalolympicsga.org
October 16 -18 National Black Child Development Institute Annual Conference:

Bridging Culture in a Changing World
Wyndham Palace Resort &Spa Orlando, FL www.nbcdi.org/conference/35ac
October 20- 21 GCDD Quarterly Meeting
Athens-East Central Region Holiday Inn, Athens, GA (Tentative) Contact Kim Person 404-657-2130 kaperson@dhr.state.ga.us www.gcdd.org

NOVEMBER
November 1 - 3 2005 US Business Leadership Network Annual Conference
Pittsburgh, PA www.usbln.com/events/conference 2005.htm

United Cerebral Palsy of Georgia
Supporting people with all developmental disabilities throughout Georgia
Email: info@ucpga.org (770) 676-2000 or 1-888-UCP-WILL
www.ucpga.org

JF&CS Division of Disabilities
"1ools forLl"'f'mg from J~

competitive mploy e tJ
*Day Pr gram
(Creative alternative to supported employment)
*Transition Pr gram
(Life Skills Development)
For more Information call 770-677-9379 or visit us on the web at www.YourToolsforLlvlng.org

:~:
'~I
I_ - - _I
UPCOMlNG
CONFERENCES

September 21-23 "Many Voices, One Vision"
Alliance for Full Participation Summit 2005 will bring together those committed to making the promises in the Developmental Disabilities Act a reality.

2 8 Making a Difference Summer 2005

Washington Hilton, Washington DC Contact: Carol Walsh, 301-706-6252 walshworks@mindspring.com State of GA Contact: Eric Jacobson, eejacobson@dhr.state. go. us
www.allianceforfullpartidpation.org

MEDIC AL UPDATE

.,_ ''
( - :,~
,\ /' ,,r:/

Emory's Specialized Genetics Clinics By Stephen T. Warren, Ph.D., Chairman

The Department of H11111a11 Genetics at Emory University 110/ds specia lty cli11ics for patients with inherited metabolic disorders, Down syndrome, Fragile X syndrome, neurojibromatosis, lysosomal storage diseases and cra11iofacial disorders.

T he Department of Human Genetics (DOHG) at Emory University is bridging benchmark genetic research with clinical treatment. This department of the Emory University School of Medicine was founded in 2001, through restructuring the existing Department of Genetics and incorporating the entire Division of Medical Genetics. The DOHG believes that gaining insight into a disease by identifying a causal gene can lead to new approaches with therapeutic interventions.
The majority of our research focuses directly on human disease, and the Department has major strengths in neurogenetics, and translational research. The DOHG is home to both the National Down Syndrome Project and a National Fragile XSyndrome Research Center (with Baylor College of Medicine), constituting the largest research program on this disorder in the nation. This year the DOHG has received a National Institutes of Health grant to support Genetic Autism research. The Emory Genetics
Laboratory (EGL) provides testing and management guidelines for the Newborn Screening Program of Georgia. Approximately three percent of all living newborns have a birth defect or health problem. These conditions may be evident shortly after birth or later in the child's life. EGL provides diagnostics for hundreds of genetic diseases, receiving over 28,000 patient specimens per year from all over the country and is the major national referral center for several genetic disorders.
Children who are not reaching developmental milestones or have characteristics of a genetic condition may be referred to one of Emory's Genetics Clinics. Specialty clinics are held for patients with inherited metabolic

disorders, Down

"Approximately

syndrome, Fragile X syndrome, neurofi-

three percent of all

bromatosis, lysosomal storage diseases, and craniofacial disorders.

living newborns have a birth defect

Our medical staff includes Board Certified

or health problem."

Pediatricians Paul

Fernhoff, M.D., Medical Director, Margaret Adam, M.D.,

Daniel Gruskin, M.D., and Jeannie Visootsak, M.D., who is

also Board Certified in Developmental-Behavioral Pediatrics.

The Department holds numerous weekly clinics for

children and adults and is responsible for all in-patient

consultations and management of genetic diseases in six

metro Atlanta hospitals. In addition, several outreach clinics

are held throughout the state. A number of clinical research

protocols are conducted by the Department, including

enzyme replacement trials for Fabry's and Gaucher's diseases

carried out by the Center for Lysosomal Disease.

Our clinical genetics team also evaluates adults at risk

to inherit an adult-onset genetic condition or those seeking

treatment for a pre-diagnosed genetic disorder. A strong

family history of cancer, heart disease, diabetes or other

potentially inherited conditions may warrant an evaluation

with a geneticist physician or counselor.

The Emory Metabolic Clinic and Nutrition Program,

administered by Rani H. Singh, Ph.D./ R.D., is a nationally

leading program, offering complete services to manage

metabolic disorders. The program also includes an annual

weeklong metabolic camp for young women with

phenylketonuria (PKU) and maple syrup urine disease

(MSUD); www.metcamp.org.

Our unique combination of a cutting-edge research

program in conjunction with a comprehensive clinical

genetics division is revolutionizing patient care.

To learn more about the DOHG at Emory University,

please visit us online at www.genetics.emory.edu.

Dr. Warren with patient Hunter Wilhite.

DR. STEPHEN T. WARREN
received his Ph.D. in Human Genetics fram Michigan State University and worked at the University of Illinois College of Medicine and at the European Molecular Biology Laboratory in Heidelberg. In 19B5 he joined the faculty of Emory University School of Medicine where he holds the William Patterson Timmie

Professorship of Human Genetics, as well as Professorships in Biochemistry. Pediatrics and the Winship Cancer Institute. Warren is a Full Investigator of the Howard Hughes Medical Institute, and he founded the Department of Human Genetics at Emory School of Medicine.
A Diplomat of the American Board of Medical Genetics with specialty certification in

clinical cytogenetics and clinical molecular genetics, Warren is a member of the American College of Medical Genetics, the Human Genome Organization and the American Society of Human Genetics (ASHG). Warren has won numerous awards, including the ASHG's William Allan Award, considered the highest award in human genetics.

www.gcdd.org 2 9

Thanks to
OUR SPONSORS
for their Support.
Albany Advocacy
Resource Center
Albany ARC, serving our community
since 1963, promotes the general welfare of people with disabilities and fosters the development of programs on their behalf.
(229) 888-6852 (24-hour on-call)
www.albanyarc.org

If you are interested in being a sponsor for Making a Difference
magazine, please call Christina Carlton @ 770-578-9765

~

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occupational therapy

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

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30 Making a Difference Summer 2005

Below, please find further resources of information related to the articles in this edition of Making a
Difference magazine.
Governor's Council on Developmental Disabilities (GCDD) www.gcdd.org
404-657-2126 or 888-275-4233 (ASK-GCDD)
State Government
General Information www.georgia.gov
Georgia General Assembly www.legis.state.ga.us/
GA House of Representatives www.legis.state.ga.us/legis/2003 _04/house/index.htm
Georgia Senate www.legis.state.ga.us/legis/2003 _04/senate/index.htm
Georgia Governor's Office www.gov.state.ga.us/
404-656-1776
GA Lieutenant Governor's Office www.ltgov.georgia.gov/02/ltgov/ home/0,2 214,2199618,00.html
404-656-5030
Dept. of Community Health http://www.dch.state.ga.us/
404-656-4507
Dept. of Human Resources http://dhr.georgia.gov
404-656-4937
Olmstead
State of GA's Olmstead Implementation Plan http://dhr.georgia.gov
Type "Olmstead Plan" into the "Search" box and press enter.

The Olmstead Decision Overview www.accessiblesociety.org/tapics /ada/olmsteadoverview.htm
The Supreme Court's Olmstead Decision http://www.findlaw.com/ casecode/supreme.html
Type "Olmstead" into the "Party Name Search" box and press enter. Select "Olmstead v. LC."
Atlanta Legal Aid www.atlantalegalaid.org
404-524-5811
Children's Freedom lnitiative
GA House Resolution 633 www.legis.state.ga.us/legis/200 5_06/pdf/hr633.pdf
Children's Freedom Initiative Summit and Georgia Advocacy Office (GAO) www.thegao.org
404-885-1234 800-537-2329
Institute on Human Development and Disability (IHDD) www.ihdd.uga.edu
706-542-3457
Statewide Independent Living Council of GA (SILC) www.silcga.org
770-270-6860, 888-288-9780 TTY: 770-270-5671
People First of Atlanta www.disabilitylink.org/docs/ people.html
Alliance for Full Participation (ALP) www.allianceforfullpartidpation.org
301-706-6252

lnclusive Recreation
Atlanta Lawn Tennis Association (ALTA) www.altatennis.org
Boy Scouts of America www.scouting.org
Boys & Girls Clubs www.bgca.org
Georgia Dance Conservatory www.ruthmitchelldance.com
770-426-0007

GA State Soccer Association www.gasoccer.org
770-452-0505
Girl Scouts of the USA www.girlscouts.org
Parent To Parent of Georgia www.parenttaparentafga.org
800-229-2038
YMCA www.ymca.net
Zoo Atlanta www.zooatlanta.org/family_Jun _summer_safari_camp.htm

www.gcdd.org 3 1

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Difference
Long Road Home
March II
Advocates took part in the Long Road Home March II, June 19-22, ending with a rally at the Capitol to celebrate the sixth anniversary of the landmark Supreme Court Olmstead Decision, a turning point for people with disabilities that opened the door to a life of freedom in the community.

The quarterly magazine of the Georgia Governor's Council on Developmental Disabilities
Volume 6, Issue 1 Summe

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

Governor's Council on Developmental Disabilities 2 Peachtree Street, NW, Suite 8-210 Atlanta , GA 30303-3142 404-657-2126, www.gcdd.org
Address Service Requested

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PAID MACON,GA PERMIT NO. 43
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