Making a difference [Vol. 5, no. 3 (Winter 2005)]

GEORGIA GOVERNOR'S COUNCIL ON DEVELOPMENTAL DISABILITIES
WINTER 2005
www.gcdd.org
Real Homes. Real Jobs. Real Education. Real Choice.

TABLE OF CONTENTS

Features
8
Fixed Budget Gap May Mean Even Longer Waits
With the
8 rate of need outpacing the growth in revenue, one expert shares his ideas for bridging the budget gap. GCDD outlines budget and legislative items to support or oppose.

12
Grass Roots Advocacy Builds Relationships
Participating in the process of educating legislators in the name of advocacy helps find candidates to champion disability issues.
18
Advocacy 101: On the Threshold of Change
Experts across Georgia explain how to advocate for the disability community.
18

12
5
GCDD Welcomes New Editor
PR veteran Valerie Meadows Suber joins the GCDD staff.
23
Disability Rights Community Loses Trail Blazer
Advocate Elaine Wilson's fight led to landmark civil rights decision.
24
Destination Equality
Discovery Tour highlights best practices for employees, organizations and more.

In Each Issue
3 Letter from
Governor Sonny Perdue
5 Editorial Cartoon 28 Resources 30 Calendar
About Our Cover: 5,517 Georgians are lined up for services and supports, yet the budget gap may mean delays for unlocking the waiting lists.

Departments

4
GCDD Viewpoint
Advocacy Key to Unlocking the Waiting Lists With new leadership in the House of Representatives, there is an opportunity to create new relationships during the 2005 legislative session.

6
News & Events
New Disability Director Named; Housing Champion honored; Person-centered planning session held; First ABILITY House built in GA; Educators honored for transition work
16
Point/Counterpoint
Legislative Partnerships or Civil Disobedience?

27
Straight Talk
Through her Partners in Policymaking class, Susie Edwards learned how to advocate for herself.
29
Medical Update
Early testing helps determine the best course of action for maximizing a child's potential.

2 Making a Difference Winter 2005

FROM THE GOVERNOR

Volume 5, Issue 3 Winter 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 Chairperson
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
Jeremy Chotiner Cover Feature
Sara Trimble Cartoonist

To Georgia's Disability Community,
T his issue of Making A Difference comes on the eve of our legislative session. As parental, care-giver, and selfadvocates for Georgians with disabilities, you will be heavily involved in the process. With your help more people with disabilities will live fuller lives by integrating into our local communities.
As Governor, I will continue to work hard to create a people-focused state government and a state budget that meets the needs of all Georgians. I remain committed to making investments in programs that achieve positive results.
The results I envision for people with disabilities are the same as I have for every Georgian. They should live as independently as possible, surrounded by people who love and care for them, in a safe community. This result can be accomplished through hard work, good ideas and creative actions. Over time, by making the best use of the state's limited resources, positive results will be achieved.
A partnership with the Governor's Council on Developmental Disabilities is essential to achieving this vision. So I welcome your best thinking and encourage your involvement with the Council.
On February 24th the Governor's Council on Developmental Disabilities will be hosting Disability Day at the Capitol. I invite you to participate in this event as we work together to improve the lives of people with disabilities in the State of Georgia.
Sonny Perdue Governor
Winter 2005 Making a Difference 3

GCDD VIEWPOINT

Advocacy Key to Unlocking the Waiting Lists

I magine waking up one March morning and reading the headlines of the newspaper:

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

It could happen. Maybe not this year, but it is not so hard to believe that Georgia could again become a leader in supporting people with developmental disabilities and their families. The real question is how to make it become a reality. I believe that it starts with advocacy each individual and family member can be the agent necessary to move Georgia from
45th in the country to number one. By joining together we can become the force that demands the changes needed to make sure that the people who require services are receiving quality supports.

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

By the time you receive this edition of Making a Difference, the 2005 legislative session will have begun.

There is new leadership in the House of Representatives, which means we have an opportunity to create new

relationships. You need to take the time and talk with the individuals you helped elect and tell them your story.

Tell them the success story of an individual who once lived in a state hospital but now lives in the community

and has a job. Introduce yourself or a family member who was

once on the waiting list but now receives supports.
Last year, families receiving supports through the Deeming (Katie Beckett) Waiver launched a heroic and successful advocacy

By joining together we can become the force that

effort. Several legislators have used this effort as an example of how interaction between citizens and their elected representatives should

demands the changes needed

work. Many families supported the leadership provided by Heidi Moore and Tonya McConnell across the state. Their focused message through the media and work with several key legislators resulted in the defeat of a proposal to

to make sure that the people who require services are

place a premium on the waiver. This year, the Department of Human Resources has recommended

receiving quality supports.

funding for 1,124 people who are currently on the waiting lists for home and

community-based services. The department has also recommended a 6 percent provider rate increase. These requests were

made because the department heard the same message from people across the state: "We must unlock the waiting lists!"

This targeted message and advocacy resulted in the waiting lists becoming one of the department's top priorities.

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

You are the power that can make the headlines in your local newspaper a reality. I look forward to seeing each of you on February 24. I invite your comments; please reach me at eejacobson@dhr.state.ga.us or 1-888-275-4233.

4 Making a Difference Winter 2005

Eric E. Jacobson Executive Director, GCDD

HOW TO REACH US
Letters to the Editor
Letters should include the writer's full name, address, phone number, and may be
edited for purpose of clarity and space. Email us at:
makingadifference@gcdd.org Call us at:
Valerie M. Suber, 404-657-2122 Fax us at: 404-657-2132 Or you can visit us at:
2 Peachtree Street, NW, Suite 8-210 Atlanta, GA 30303-3142 Sponsorship:
For sponsorship opportunities contact: Christina Carlton at 770-578-9765 or christina@oneillcommunications.com
Subscriptions / Back Issues
Visit us at our web site: www.gcdd.org or call us: 404-657-2126
It is the policy of Making a Difference to publish readers' comments. Contents do not
necessarily reflect the opinions of GCDD, the editors or state government.
Johnny becomes eligible for state funded sevices and supports . . .

GCDD WELCOMES NEW EDITOR

Suber Joins GCDD as Public Information Director, Editor-In-Chief

F or as long as she can remember, Valerie Meadows Suber, new public information director of the Governor's Council on Developmental Disabilities and Making A Difference magazine editor-inchief, wanted to communicate ideas to foster positive social change and improve conditions in people's lives.
Media coverage of events during the civil rights movement sparked Suber's early interest in public affairs. Its message of access and inclusion for all Americans captured her attention. As her appetite for news and information grew, she set her sights toward journalism that she studied at Boston University's School of Public Communications.
"I personally share the vision of GCDD that supports and encourages inclusion, choice, achievement, potential, opportunity and advocacy for all persons, and I believe Making A Difference magazine is an important instrument for furthering public dialogue among all stakeholders within the developmental disabilities community," Suber said.
Suber produced public affairs television programming in Philadelphia, where she crafted relevant shows on the day's topics, including an Emmy-nominated documentary.
She served as a coordinator of community and media relations for Atlanta City Council, implementing community outreach and constituent services through district newsletters, community empowerment conferences and special projects.
As executive director of Kids Voting Atlanta, a nonprofit civics education organization, Suber managed a program for thousands of K-12 students that introduced the fundamentals of citizen participation in the democratic process, complete with a voting experience during election cycles at official polling precincts.
Suber provided spokespersons for community forums, media, news conferences and symposiums on a variety of social and economic development issues

targeted by The Atlanta Project, a community outreach initiative of The Carter Center.
The sudden loss of nearly 80% of her eyesight did not deter Suber from pursuing work she loved. In fact, she became convinced that she had a lot more yet to offer. "I realized I would have to embrace the concept of interdependency. I knew I would have to commit to learning new ways of functioning in order to remain productive."
Suber enrolled in classes at the Center for the Visually Impaired in Atlanta to acquire skills in the use of adaptive equipment and computer software. She became proficient in using magnification and speech screen reading devices. She was determined to continue to participate fully and effectively as a visually impaired person in a sighted world. Thanks to modern assistive technology, a system of family and community support and a lot of due diligence, she is doing exactly that.
Suber will assist GCDD Executive Director Eric Jacobson on a variety of special assignments and tasks.
"We are very excited to have Valerie join our team. She will help us educate the media and public about the needs of people with developmental disabilities and their families. She brings a new level of professionalism to our Valerie Meadows Suber public relations efforts based on her knowledge and experience," Jacobson said.
Suber will manage GCDD's internal and external communications and publications. Greater emphasis on public awareness of developmental disabilities policy and programs will be among her top priorities. q

Winter 2005 Making a Difference 5

NEWS & EVENTS

DHR Names New DD Director

Stephen R. Hall, Ph.D., became

director of the Office of Developmental

Disabilities of the Georgia Department of

Human Resources (DHR), January 1. Hall

received his Ph.D. in disability policy from

Virginia Commonwealth University and

brings 14 years of executive leadership

serving people with developmental

disabilities. Hall leaves his position as

executive director of the Resource

Exchange, a community-centered board in

Colorado

responsible

for disability

service systems

for children

and adults

where he

managed a $24

million budget.

Hall will work

directly with

Division of

Mental Health,

Developmental

Disabilities

and Addictive

Georgia's new director of the Office

Diseases

of Developmental Disabilities,

(MHDDAD)

Stephen R. Hall, Ph.D.

Director Gwen

Skinner. "We

believe that we have the best candidate

for helping to move Georgia's disability

community to the next level," Skinner

said.

As DHR continues to expand and

enhance community partnerships,

advocates served an important role in the

selection of the best person to support

issues specific to Georgia's disability

community. Eric Jacobson, executive

director for the Governor's Council on

Developmental Disabilities, participated in

the selection process and stated, "We are

excited about Dr. Hall's appointment and

look forward to working with him to

create a new vision for Georgians with

disabilities."

With input from key stakeholders,

Hall will be responsible for developing

and implementing state policy for

developmental disability services, in

addition to setting standards for services

and expected outcomes of those services.

Housing Champion Honored for Service
Eleanor Smith, founder of Concrete Change and co-founder of Georgia's EasyLiving Homecm program, was recognized for her outstanding achievements in affordable housing by the Georgia Department of Community Affairs (DCA) during its Fourth Annual Housing Georgia Conference and Magnolia Awards Program November 10.
Smith received the Housing Champion Award in honor of her pioneering work in the "visitability" movement.
Visitability is the movement that focuses on designing housing in such a way that it can be lived in or visited by people with disabilities. According to Smith, "a house is considered visitable when it meets three basic requirements:"
At least one zero-step entrance. Doors and hallways wide enough for a
wheelchair to navigate through (minimum 32" clearance). A half bathroom on the main level large enough to be accessed by someone in a wheelchair.
Smith says her goal is to have visitability in every new home. DCA Commissioner Mike Beatty lauded Smith for "her efforts to make life easier for millions of people with disabilities and richer for millions of able-bodied people who will someday find their homes easier to live in and find it easier to welcome everyone into their homes."
Smith's determination has also helped to make the EasyLiving Home program a model certification program for other states. The program allows participating builders to certify that their homes are visitable and meet certain standards.
Among her other numerous achievements, Smith has received a Best Practices Award for Visitability from the Department of Housing and Urban Development in 1999 and the Vital Service Award from the Atlanta Alliance on Developmental Disabilities in 2002.

6 Making a Difference Winter 2005

Eleanor Smith (center) was presented this year's Housing Champion Award for her work to bring visitability to all new homes by Carmen Chubb, DCA director of housing, finance division (l) and Mike Beatty, commissioner of DCA (r).
While accepting the Housing Champion award, Smith reminded the audience that though there has been much advancement in making public spaces accessible, "the current reality of typical home construction leads to some fairly severe consequences." She explained, "People who develop mobility impairments are suddenly cut off from the homes that make up the core of their social life, from their adult children and siblings, from their neighbors and from long-time friends." Unfortunately, for some Smith says, "their own homes change from being a refuge to becoming a source of frustration and danger."
For more info about Concrete Change visit www.concretechange.org, for EasyLiving Home program, visit www.easylivinghome.org.
Transitioning Students Participate in PersonCentered Planning
The Georgia Department of Human Resources recently hosted a personcentered planning session, "Transition into Adulthood," for people with disabilities in Duluth, as part of a three-year project funded by a grant from the Center for Medicare and Medicaid Resources.
During the two-day session, individuals with disabilities and their circles of support were taught to "think outside the box" and begin to develop plans to achieve key life goals.
Internationally renowned personcentered planning experts Connie Lyle O'Brien and Beth Mount are consulting with the Department of Human Resources Division of Mental Health, Developmental Disabilities and Addictive Diseases (DHR/

NEWS & EVENTS

MHDDAD) on implementation of staff training as well as conducting groupfacilitated person-centered planning.
"We hope the participants and providers will take what they learn back into their communities and show others how to implement person-centered planning," explained Stephanie Frankos, project coordinator, who is responsible for implementing the goals and reporting outcomes to MHDDAD.
What is learned during the session will also be used to help implement system change, and Georgia hopes that the expansion of services that are personcentered can support principles of selfdirection.
"By bringing groups of people together (families, schools, neighbors, friends, churches, etc.) it is our hope that natural resources can be utilized in support of independent and meaningful lives," Frankos said.
Volunteers with Disabilities Build Atlanta's First ABILITY House
Volunteers with all ranges of disabilities, including paraplegia, amputations, low vision, Down syndrome and more united at an Atlanta Habitat for Humanity home site in East Point to build an ABILITY House for Kawa Talabani, his wife Amina Shaheen, who has heart disease, and the couple's four children, ages 13, 11, 4 and 10 months.
An ABILITY House is an affordable, accessible home built for a low-income family in which one or more members have disabilities. The ABILITY House program also uses volunteers with disabilities during construction and was recently honored by President Bush with a Presidential Community Volunteer Award.
"I always wanted to be a part of Habitat, but I thought my wheelchair might get in the way," said Stephany Glassing, of Marietta, who worked several days on the project. Glassing helped cut siding and caulk chair rail on her visits to the home site. "I never felt like an

outcast, and they gave me a lot of hands on work, which I thrive on. I really had a good time with it. I wish they'd build more houses like it in Atlanta," she said.
"We have had tremendous response to the ABILITY House project and are pleased to be bringing it to Atlanta," noted Chet Cooper, executive director of ABILITY Awareness, the organization that oversees the program. "It is also great to be working with the Atlanta Habitat affiliate, which is already dedicated to incorporating accessibility and visitability features into each home they build."
Volunteers with disabilities worked alongside volunteers from BellSouth and BellSouth Telecom Pioneers to complete the home in only seven days of construction, over seven weekends. The Home Dedication Celebration was Saturday, Dec. 11, followed by an open house showcasing the home's many universal design and visitability features.
Talabani and Shaheen are the first recipients of an ABILITY House in Atlanta. Shaheen, 35, had a lifethreatening split in the wall of one of her major arteries in November 2003 and has since had coronary bypass surgery and has an implanted defibrillator, that shocks her heart if it stops beating for too long. The device causes weakness and discomfort in Shaheen's left arm. She is frequently exhausted, and she has difficulty reaching, opening doors and performing routine household tasks.
Educators Honored for Transition Work
Pioneers in transitioning students with disabilities from school to work were honored October 29 during the Power Up For the Future (PUFF) Conference.
The Transition Honor Roll recipients prepared students to navigate the system of adult supports and services, while also preparing them for jobs.
The recipients, who were selected by representatives from the Department of Labor, Department of Education, Department of Technical and Adult

Volunteers with disabilities worked alongside volunteers from BellSouth and BellSouth Telecom Pioneers to complete the ABILITY House in only seven days of construction.
Education and the Statewide Transition Steering Committee, include:
Debbie Mentzer, Beverly Blue, Jane Bruno, Paige Case, Carol Herb, Margo Greene, Denise Klesick, Mary Ford and DouglasAnn Smith of Savannah/Chatham County Schools began including a vocational endorsement seal on Special Education Diplomas to signify students completed a rigorous vocational curriculum. They also worked with a technical school to increase opportunities for students with disabilities.
Dr. Mike Blake and the Clarke County Schools Interagency Transition Planning Council in Athens are developing a regional Interagency Transition Planning Council to serve the rural areas of northeast Georgia. These councils bring various agencies together so students can access them more easily.
Teresa King, Lori Oliver, Lisa Rothschild and Cindy Saylor of Flowery Branch High School in Hall County received a grant from the Governor's Council on Developmental Disabilities to help students develop self-determination skills, using a person-centered approach when developing transition plans. The staff also formed a "Partners Club" that pairs students with and without disabilities for school, community, civic and social activities.
Denise Oravec of Rockdale County Schools developed a proposal to attach a seal of endorsement for participation in a rigorous vocational preparation program on the Special Education Diploma. q

Winter 2005 Making a Difference 7

By Valerie Smith Buxton
Fixed Budget Gap
May Mean
Even Longer Waits

Brian De Chant has been waiting for state services for 13 years.

K aren and Art De Chant have been waiting 13 years
for a full Medicaid waiver
for their son Brian, 31, who has
Cockayne syndrome. Brian requires
constant supervision and has a
number of health issues related to
his disability, including hearing loss,
poor vision, extreme sensitivity to
the sun and a frail body.
"We need a support system. Taking care of Brian is like having a three or five-year-old for a very long time. We can't leave him alone, and you can't get a babysitter for a 31-year-old man," Karen De Chant said.
After Brian left school, De Chant had to cut back her work hours to part time to take care of him. While waiting for the waiver, the De Chants have been relying on respite care, the People Making Progress program and the YMCA's HAPPY Program that pairs young adults with and without disabilities for social activities.
While these programs provide some support, caring for Brian has been difficult. "We don't have a normal social life, and it's impacted our income because I can't work full time," De Chant said. "One of our fears is that we will die before he does." In addition, the De Chants pay extraordinary costs for dentistry and hearing aids that aren't covered with insurance. "When we call about the waiver, they always say we're on the short-term list, but last year there were only 10 waiver slots," she said. Brian joins 5,516 other Georgians who are

waiting for the state-funded supports and services

they need to remain with their communities and

families. Without these supports and services in

place, many of these people may have to move into

institutions, which cost taxpayers much more than

community-based services.

"These are some of the most critical services

for people that without these supports would be

our state's most vulnerable. These needs will not go

away, and we have to begin facing them today,"

said Dave Blanchard, of Atlanta Alliance on

Developmental Disabilities.

People go on waiting lists when their area

Regional Boards cannot serve them and/or meet

all their needs due to lack of funding.

Some progress has been made. The new

Director of the Division of Mental Health,

Developmental Disabilities and Addictive Diseases

Gwen Skinner included funding for more than 1,100

people to come off the waiting lists within the

proposed Department of Human Resources (DHR)

budget. But that still leaves more than 4,400

Georgians waiting for help. And, the slots will only

be funded if Governor Sonny Perdue approves a

DHR budget that is 105% of the current budget.

The

problem is " When we call about the

worsened by the fact that

waiver, they always say

Georgia is

we're on the short-term

facing a

list, but last year there

budget gap of

$1.5 billion were only 10 waiver slots."

caused by an

increase in need for state-funded services and a

decrease in the revenue stream. Alan Essig,

executive director of the Georgia Budget and Policy

Institute, a nonprofit, nonpartisan organization,

explained, "In the `90s, when the economy was

good, our revenues were good. Personal income

and capital gains revenue was up. At the same

time sales tax revenue went down due to

exemptions for certain items, but revenues didn't

decline because the economy was strong."

8 Making a Difference Winter 2005

The problem is worsened

However,

waste. There's just not much waste. What we have

by the fact that Georgia in the 2000s,

is facing a budget gap

Essig noted, "When the

to decide as the family of Georgia is the role of our state government and what we are willing to pay for and revise the tax structure to fit.

of $1.5 billion . . .

recession

"It's very difficult right now to

started, capital receive additional funding or

gains and income went back to normal levels, and the erosion in the sales tax was noticed. For two years in a row, 2001 and 2002, revenues decreased

even continued funding for existing programs."
Essig suggests

FY05 Budget
State of Georgia

for the first time since the 1930s."

advocating for new

While moderate revenue growth has returned at revenue sources might

about a rate of 6 - 7%, expenditures are increasing be a more effective

at a higher rate than that, Essig said.

way to fund services

For example, the Department of Community

for people with

Health (DCH) has projected it needs $2.35 billion

disabilities who are on

to maintain its level of service because more people the waiting lists.

are enrolling in Medicaid every day. The governor

"I'm not suggesting

has asked each department to prepare a budget

we tax food or medicine,

that is 97%, 100% and 105% of last year's budget. but we could tax services

Even if DCH receives 105% of the current state

used by people in upper

budget and its expected federal funding, it will fall income brackets, such as lawn care,

$170 million short of what it needs to deliver

hair cuts, accountants or lawyers," he said.

services, so cuts will need to be made.

Essig also pointed out that Georgia loses

"In the `80s and `90s, about 5.9 cents of every between $300 - $400 million per year of potential

dollar we earned went to the state. Now it's down revenue because it does not have a sales tax on

to 5.3 cents. That causes a budget gap of $1.5

items purchased over the Internet, and it loses

billion," Essig said. "Our needs have increased due about the same amount from corporations taking

H5ow Many Pe5ople Are Wait1ing? 7 to growth, but we're asking less of each person." While budget cuts can free some money, most state budgets have already been cut significantly in the past several years, and not many areas can afford more cutting.
"We need to maintain a culture of excellence, not fund the programs that don't work and root out

advantage of loopholes that should be closed. "If we don't do something about revenues,
we can expect continued budget cuts for the next three to four years," he concluded.
For Brian De Chant and the 5,516 other Georgians on the waiting lists, that is a long time to wait. q

Short-Term
2481

Long-Term
2825

179 Independent Care Waiver 32 Traumatic Brain Injury

Winter 2005 Making a Difference 9

FEATURE

Advocates Needed to
Support and Oppose

Proposed Budget Items By Patricia Nobbie, D.P.A. GCDD Policy Director

W hile Alan Essig suggests advocates consider a long-term fight for new sources of revenue to fund their needs, the Governor's Council on Developmental Disabilities has identified several legislative items that require advocates' immediate attention.
These agenda items are gathered by the staff and me, with input from other advocates, throughout the late summer and early fall as the agencies develop their budgets, and issues emerge.
The GCDD's agenda is divided into "Top Priority" and "Second Priority" levels, indicating the level of focus and advocacy that Council members wish the policy staff to place on the issues.
We recognize that the agenda is a moving target, and the policy staff needs to be able to shift gears or make changes as new issues emerge. When an issue arises during the session on which I believe the GCDD needs to take a position, I contact the Public Policy Committee, who recommend action, and this recommendation goes to GCDD for a vote.
For the 2005 session, most of the items on the legislative agenda concern the budget. Georgia will again experience budget cuts for the FY06 fiscal year. The governor asked the agencies to submit three budgets for his consideration; a 97% budget that effectively cuts all programs by 3%; a 100% budget that would keep agency allocations the same as last fiscal year; and a 105% budget that allows a 5% increase in funding over FY05. However, for the Department of Community Health (DCH), Medicaid Services, the 105% budget still means a cut of 43 million dollars in state funding due to the growth in Medicaid enrollment and expenses. Advocates believe that the governor will select items, both cuts and additions, from among these three budget scenarios. Therefore,

we will not really know where to focus advocacy efforts until we hear the governor's budget address in January. The legislative agenda items that the GCDD voted on to support in the upcoming session are listed on the next page in order of priority.

Change in Legislative Session Schedule

The session begins the second Monday in

January, and proceeds for 40 days. A "day" is

counted when both houses are in session. In the

past, lawmakers adjourned to conduct budget

hearings the entire second week of the session.

The joint house and senate appropriations hearings

were always the opportunity for advocates to

present their input on potential budget cuts or

adds. This year, Capitol Impact reports there will be

no more early budget hearings. Instead, there will

be "budget briefings" on Jan. 18 and 19, but at

this time, we have no information on who would

participate in those briefings. Senate President

Pro-tem Eric Johnson and Speaker-elect Glenn

Richardson have agreed that the General Assembly

will convene as required on Jan. 10 and stay in

session for three days. The legislature will be in

recess from

"For the 2005 session,

Jan. 13 through Jan. 23, and

most of the items on will reconvene

the legislative agenda for the fourth
day of the
concern the budget." session on Jan.

24 at 1 p.m.

Advocates can stay tuned to Moving Forward,

a legislative update issued weekly from January

to the end of the session by the GCDD, for other

changes in the legislative session procedures,

and for current news on the budget and active

legislation. Also, check the web site, www.gcdd.org,

under the Public Policy heading for fact sheets

related to budget and legislative items. q

10 Making a Difference Winter 2005

GCDD LEGISLATIVE AGENDA

GCDD Defines 2005 Legislative Agenda

Top Priority Items 1. Oppose Cuts to Medicaid Services for People
with Disabilities in the Department of Community Health budget. The targeted cuts are as follows:
Second Priority Items Set fixed expenditure cap for the Independent
Care Waiver Program (ICWP) at $50,000. This
1reduction will potentially affect 116 persons
whose average annual expenditures currently
2 exceed this cap. ($1.1 million*)

1. Oppose premiums for the Katie Beckett Waiver (access to Medicaid for families with medically fragile children) ($1.5 million)
This item is only in the 97% budget scenario.

Cap eligibility for the Mental Retardation Waiver

The premium proposal was successfully fought

Program (MWRP) at two times SSI ($13,248 per

off last legislative session. In addition, as of

year). Individuals on the waiver program who

December 1, the CMS regional office had not

work and have incomes that exceed this amount

received an amendment to the current waiver

annually will lose their Medicaid eligibility and

that is required to begin charging premiums.

therefore their waiver. ($24.6 million)

Provider Rate Cuts: There is a 3% provider rate cut included in the 100% and 105% budgets, and a 5% cut in the 97% budget. This cut comes on the heels of a 10% cut in the FY04 budget. Rates are protected for nursing homes, hospitals and pharmacy providers. ($41.8 million for 5% cut)
Elimination of emergency adult dental services. ($7,165,753)
Elimination of orthotics and prosthetics services. ($1,531,140)
Elimination of podiatry services. ($1,138,540)
Elimination of hospice care. ($10,328,171)

2. Medication Administration: Support amendments to the Nurse Practice Act that would enable direct support staff to administer certain routine medications to the consumers they support. Staff would be required to complete a Medication Administration Certification Program before being allowed to administer meds.
3. Support Amendments to the Election Code. The following changes to the election code have been discussed with the Secretary of State's office, and we expect to have a bill drafted and prefiled before the session begins.

* figures are state dollars to be removed from the budget, and do not reflect the loss of federal Medicaid dollars

Remove term "physical" disability from election code and redefine disability consistent with the ADA.

2. Support budget request for waiver slots in the Department of Human Resources budget. (Unlock the Waiting Lists! allocation)
The Division of Mental Health, Developmental Disabilities and Addictive Diseases (MHDDAD) proposes paying for 30 slots at $653,846 in the 97% budget, 924 slots at $3,451,129 budget, and 1,124 slots at $7,908,713 in the 105% budget.

Amend absentee voting language to enable those who provide attendant care to assist with absentee voting without penalty.
Amend oath requirement provision so voters with disabilities who need assistance are not treated differently from other voters who need assistance.
Allow poll workers to assist voters with disabilities in any election, not just federal elections.

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

Create provision that requires all election and voting information available to the public be made available in accessible formats.
Consider alternative voting procedures such as curbside voting.

Winter 2005 Making a Difference 11

By Gordon O'Neill
Grass Roots Advocacy Builds Relationships

A dvocacy for many begins long before Georgia's legislative session opens in January; it begins during the election process as the political parties approach their respective primaries.

For some, the political process begins

even earlier with recruiting candidates that are

sympathetic and, better yet, will champion

disability and social services issues.

Heidi Fernandez is the chairperson of the

Advocacy and Information Committee of the

Governor's Council on Developmental Disabilities

(GCDD) and the mother of Andrew, a 10-year-old

with autism. She attended the North Fulton

forum and collaborated with a number of people

to organize and sponsor a political forum

in Cobb County.

"I think we were able to bring

"I think we were able families and legislators together and

to bring families and legislators together

for some families, it was the first time they ever met a legislator," Fernandez said. "For the families, it was the

and for some

beginning of building relationships that

families, it was the first time they ever

will continue throughout the legislative session, and it was a great opportunity to educate legislators."

met a legislator."

Twelve candidates participated in

the Cobb County forum, and two

legislators who were running unopposed

attended just to learn more about the issues

surrounding the disability community. The forum

focused strictly on disability issues and was held

in the Cobb County Commission chambers. It was

moderated by Carmen Burns of 11 Alive News and

attracted over 100 people.

Fernandez was pleased with the turnout saying,

"Any time we can get parents, care providers and

12 Making a Difference Winter 2005

legislators together, we are being successful.

The key is really building those relationships with

our legislators; that is the most important thing.

"Give yourself enough planning time," she

advises to those considering sponsoring a political

forum. "Collaborate with other organizations and

individuals in the community; work on getting the

word out to as many organizations as you can."

She took her own advice and worked with

13 organizations to sponsor the Cobb County forum.

Sponsors included Georgia Community Support

and Solutions, Cobb ARC, Atlanta Alliance for

Developmental Disabilities (AADD), GCDD, Marietta

Enrichment Center,

Art & Food, Tommy Nobis

"Collaborate with

Center, East Cobb other organizations

Civitans, Marietta Civitans, Austell Civitans, Project

and individuals in the community; work on

Bridges, ARC of

getting the word out

Georgia and the Rose Garden/ Davenport

to as many organizations as you can."

Neighborhood

Association.

Generally the questions and topics focused

on the need to move people from hospitals to

community residences and the funds needed to

unlock the more than 5,000 people on the waiting

lists. Other topics included proposed premiums to

the Katie Beckett (Deeming) Waiver and the

importance of early intervention.

Generally, the debate is not whether a candidate

will support programs that help people with

disabilities, but where disability funding issues fall

as a matter of budget priorities. To be effective,

activists have to assure that their disability

questions are well thought out, and that candidates

are measured and considered on their commitment

to the disability priorities.

Steve "Thunder" Tumlin, (R-Marietta) now

represents House District 38 and participated in the

Cobb forum which greatly affected him. "They sent

(continued on page 14)

Candidates Learn from Disability Forums

C andidates around the state attended a number of forums sponsored by AADD, Family Connections and other social services organizations. "The disability community appreciates the time that legislators and those running for public office will give us by attending these forums. They have the daunting task of needing to be aware of and knowledgeable about numerous issues. These forums are an opportunity for people with disabilities and their families to educate them about their issues of concern."
The following state senators and state representatives were reported as participating in one or more forums.

State Senate
Senator John Douglas (R-Covington) District 17 404-375-1234
Senator Steen Miles (D-Decatur) District 43 Smiles2k@bellsouth.net
Senator Dan Moody (R-Alpharetta) District 56 404-463-8055
Senator Chip Rogers (R-Woodstock) District 21 404-656-0188
Senator Steve Thompson (D-Marietta) District 33 770-427-2600
The Editor apologizes to any candidate who was elected and attended one of these forums and whose attendance was inadvertently not reported.

State House of Representatives
Representative Clay Cox (R-Lilburn) District 102 Asc647@bellsouth.net
Representative Matt Dollar (R-Marietta) District 45 770-485-1946
Representative Earl Ehrhart (R-Powder Springs) District 36 770-437-7536
Representative Harry Geisinger (R-Sandy Springs) District 48 678-777-6010
Representative Rich Golick (R-Smyrna) District 34 770-319-7200

Representative Terry Johnson (D-Marietta) District 37 770-432-7028
Representative Jan Jones (R-Alpharetta) District 46 404-656-0137
Representative Gene Maddox (R-Bainbridge) District 172 229-377-1812
Representative Randall Mangham (D-Decatur) District 94 404-525-0100
Representative Robert Mumford (R-Conyers) District 95 xda92@mmm-law.com
Representative Don Parsons (R-Marietta) District 42 404-656-0314
Representative Tom Rice (R-Norcross) District 51 404-656-0325
Representative Ron Sailor, Jr. (D-Decatur) District 93 404-656-0137
Representative Donna Sheldon (R-Dacula) District 105 404-656-0188

Representative Pam Stephenson (D-Atlanta) District 92 404-656-0126 Representative Rob Telheit (D-Cobb) District 40 404-656-0202 Representative Steve Tumlin (R-Marietta) District 38 770-428-9060 Representative Wendell Willard (R-East Roswell) District 49 404-656-0314 Representative Don Wix (R-Mableton) District 33 404-656-0254
Newly elected Representative Harry Geisinger (R-Sandy Springs) attended the forum in North Fulton County in September.

Winter 2005 Making a Difference 13

FEATURE

us four questions in advance, and you had to do

your homework for the forum," he said. "I was not

aware of the waiting lists until I did some research,

and without that meeting, I would probably never

have brought myself up to date on

"My awareness

these issues."

quadrupled, and I was impressed that

Even with a close family member teaching special education, Tumlin admits, "My awareness quadrupled,

not only advocates

and I was impressed that not only

were there but people with special needs

advocates were there but people with special needs were there, too.
"You can talk to all the

were there, too."

legislators and see that everybody's

heart is there," Tumlin said. "We

need to give the needs for these special people a

special place in the budget."

Sen. Steen Miles (D-Decatur), who covered a

number of disability issues when she was a reporter

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

for 11 Alive News, participated in the DeKalb County forum. "The disability community is the only one any of us can belong to on any given day. It cuts across race, age, socio-economic status," she said.
With the budget process already started for the next year, Miles has asked for funding for a number of projects for people with disabilities, including a respite center in Rockdale County and a foundation that provides scholarships for people with physical disabilities.
"We have to make certain we advocate, support and take care of people's needs. It's our responsibility to do so," she said.
This past year, the disability community was

quite active in creating and

aHndfoosRrAetSpitnGraegutseieFdSnoeetarntatuiotvmeess

participating in

candidate forums

on the local

level. Through

its Partners in Policymaking leadership class

Developed by GCDD

and alumni, the AADD sponsored

five different candidate forums and encouraged

disability activists to participate in forums

sponsored by other social services groups such as

Family Connections. Dave Blanchard, public policy

director of AADD, said, "When disability issues are

connected to larger issues that the community

cares about, there is a much better chance that

we can be at the table with our issues."

AADD even provided grants to help people

organize political forums, and GCDD developed a 23-

page "Guide to Hosting Forums" to help people put

a successful forum together. The strategy paid off,

allowing the disability community to connect with

other organizations and legislators across the state.

Newly elected Rep. Gene Maddox (R-

Bainbridge) of House District 172, attended a

Family Connections forum in Bainbridge. He is

enthused about representing his constituents in the

state house and encourages people with disabilities

to contact their legislators and get them involved

in their issues.

"I've already been contacted by two young

boys, one I met at the Bain Company and one I

met at Family Connections (two separate forums),

and I am already

trying to help them," he said. "At the forum,

"The disability community is the only

listening to people, I realized that people with disabilities need

one any of us can belong to on any given day. It cuts

help, and I am for helping people who need help."

across race, age, socio-economic status."

His calendar

is now full of meetings with other organizations

and after listening to so many issues from so many

people, he realizes that issue after issue concerns

the budget. As the economy turns around, Maddox

wants to be sure people with disabilities get their

share of the new tax revenues. He concluded by

saying, "My heart is sad for people who need help

and we need to support them as much as we can."

14 Making a Difference Winter 2005

GRASS ROOTS ADVOCACY

Writing letters to your elected officials is one way to advocate for change. Shelby Lindsey (left) expressed her frustration with transportation issues pertaining to her job in a petition to Councilman David Tolleson of the City of Roswell (right).
The political activity extended to Gwinnett County where Tiffany Fleming and Lori Von Schmeling were part of the team that organized a forum there. Disability-sponsored forums were also held in Henry and Barrow Counties.
"Through the Partners in Policymaking program, we encourage graduates to get involved," Blanchard said. "The reason behind all of that is to help these parents get to know the legislators when we think they are listening the most."
Lea Goodman, mother of a son with cerebral palsy, was a member of the Partners in Policymaking leadership training class and worked hard on both the North Fulton and DeKalb County forums. But she took her classwork to a whole new level in the political arena and "had an incredible experience."
As part of the course, she was assigned to find out who her state representative and senator were, which led her to State Sen. Dan Moody (RAlpharetta). She shadowed him throughout a full day in the state legislature, a day that included a meeting with Governor Sonny Perdue's aides.
With this initial success, she shadowed as many politicians as possible as her major project for the course. This gave her a unique opportunity to educate legislators about the issues facing the disability community, most particularly the importance of keeping premiums out of the Deeming Waiver program. In addition to Moody, she developed close working relationships with State Sen. David Adelman (D-Decatur) and State Rep. Mark Burkhalter (R-Alpharetta). She said, "I believe it made a difference as part of a greater grass roots movement.

"I never really thought much about grass roots

it turned my world around," she explained. "What

I learned from the AADD course is there is power at

the bottom, there is a lot of power at the bottom.

We can do what we did last

year, keep the programs we

"What I learned

need to keep our kids at home

and unlock the waiting lists

from the AADD

for those in institutions and

course is there is

hospitals waiting to go home. "Our class' advocacy at
the capital kept the Deeming

power at the bottom, there is

Waiver alive, and I thank him a lot of power at

(her son Sammy) for what he did for 5,600 families," she

the bottom."

said, crediting her son with

her own motivation.

"I just jumped in there and it worked, it

worked. I constantly thank Sammy for what he has

given our community." q

Contacting Georgia Legislators
Identify your legislator: http://www.sos.state.ga.us/cgi-bin/locator.asp
Find your legislators' contact information: http://www.legis.state.ga.us/
Information about the House of Representatives: 404-656-5082, 800-282-5800 http://www.legis.state.ga.us/legis/2003_04/house/index.htm
Information about the Senate: 201 Legislative Office Building Atlanta, Georgia 30334 404-656-0028 http://www.legis.state.ga.us/legis/2003_04/senate/index.htm

Winter 2005 Making a Difference 15

Legislative Partnerships or Civil Disobedience?

Educating Legislators Is Vital to Advocacy Success
By Grace Fricks

W ith the upcoming legislative session, each of us has a chance to make a difference in the lives of people with disabilities. Some may choose to take direct action such as a march, a sit-in or a protest; others choose to participate by getting involved in the legislative process. Both are valid approaches. Both are necessary because they combine to make a one-two punch.
As a former paid advocate, I cannot stress enough the importance of educating your local legislators. Remember, many are new in 2005. So
Grace Fricks
is the former director for Georgia's Unlock the Waiting Lists! Campaign, which advocates for home and community-based services for people with disabilities. An advocate for 20 years, she received the 2002 Advocate of the Year Award from the Governor's Council on Developmental Disabilities. She is President of Appalachian Community Enterprises, a private non-profit organization helping people start businesses.
how do we make the best of our chances to reach these newcomers as well as seasoned lawmakers?
First, and most importantly, get to know your own state senator and representative early so you will be a resource for them later. When they think of disability issues, they will remember you. All politics are local politics; if everyone made it a point to know his or her elected state officials there are only two of them -- we would have a much stronger voice. Send a letter introducing yourself and congratulate them on winning the election. Everyone loves congratulations! Explain what you can do for them. If you think you are powerless, think again. By sharing your story, you can help them be attuned to the strengths and needs of people with disabilities and this knowledge will help them become a better public servant. Don't stop with a letter, however.

Follow up with a phone call to arrange an appointment. Because they get so much mail, it's important to actually meet them. Make it brief no more than 15 minutes. During that visit, let them know you will be available to help them with any issues that come up in the session regarding disability. Share your story, but don't overwhelm them with long, drawn out details. The purpose is to begin a relationship that builds over time. Remember you are the expert on disability. If your legislator doesn't have a family member or friend with a disability, he or she won't have any first-hand experience. Legislators really need your insight and advice.
Secondly, participate, participate, participate. Here are three strategies that I consider most important for unpaid advocates. Roll up your sleeves and roll down the halls of the Capitol. Lobby for a budget item, piece of legislation or simply make your presence known. You don't have to know everything about every issue. Part of the role of the paid advocate is to direct you to where you can make the most difference. In fact, it strengthens the ability of the paid advocate as well as the entire disability rights movement if unpaid advocates like you participate.
Write a letter, email or call your legislators when your advocacy organization asks you to speak out. By taking this action, you are letting legislators know that the message of the paid advocate is the message of the people at home.
Attend Disability Day at the Capitol. You'll be strengthened and inspired by meeting people from all over the state who care about the same issues.
Each of us could and should be a part of any one of these advocacy activities. The influence to affect policy that any paid advocate holds stems from the people he or she champions. For example, you are the power behind the Unlock the Waiting Lists! Campaign. We were able to influence appropriations and state law because we could depend on people from Waycross, Blue Ridge, Columbus, Gainesville, Waynesboro and Bainbridge to call their elected officials. I was a paid advocate; you don't have to be. Just do your part. q

16 Making a Difference Winter 2005

Why It's My Choice: When To Choose Civil Disobedience
By Mark Johnson, M.Ed.

"C onfrontation is a thing of the past. This is 2004, a time for partnerships." My experience tells me most advocates are willing to come to the table at any time and seriously discuss the issues, but I have not seen too many of our opponents come to the table willingly. Partnerships are great as long as there is mutual respect. Frequently consumer groups usually have to fight to get that respect. In most of the productive partnerships I've helped form, we first had to get the attention of our opponents. Translated, that means they had to be confronted. Few things cause as much controversy as confrontation. Yet Civil Disobedience (CD) is the main focus of nonviolent direct action movements around the world. Why do people participate in CD? For some, it's for very personal reasons. For others, it's out of rage, anger or lack of real progress with electoral politics or "normal" channels. But, the main reason people participate and stay committed to CD is that it works. From the Boston Tea Party, to Gandhi's Salt Campaigns, to the `60s civil rights lunch counter sit-ins, to ADAPT's blocking of buses and crawling up the steps of the U.S. Capitol, CD has continued to show its strength as a vehicle for change. In the last 10 years, confrontation and direct action have become popular in the disability rights movement. Marches, rallies, sit-ins and other CD protests are moral acts. Through open disobedience, we take back some of the power we have lost to the institutions of society and use the power in a nonviolent way to get the opponents'

attention and bring about fundamental change. When real change finally occurs, it's always been about an emotional change, not an intellectual persuasion. Direct action creates emotion.
Unfortunately many people still fear direct action. After all, it isn't something you learn in school or that most parents teach. Some people want to believe research, being nice and normal channels are enough. Some people don't want to be involved in the down-and-dirty, labor
Mark Johnson, M.Ed.
is the Director of Advocacy at Shepherd Center in Atlanta. He has been advocating for people with disabilities for 25 years, and helped form ADAPT (American Disabled for Attendant Programs Today). He has served as past president of the Fund for Southern Communities that supports social change in NC, SC and GA, and has an extensive background in independent living.
intensive work of organizing. Lastly, some people are embarrassed by confrontation. Unfortunately for many of them, change becomes something they resist and fear. Denial and conformity become a way of life.
Personally I don't think it's about normal channels and being nice versus confrontational. A well thought out strategy must make use of multiple tactics. What becomes critical is making decisions about when to use what tactic, if at all.
My conclusion after 25 plus years of organizing is that confrontation and direct action still work and will be around as long as there are people who demand respect and want to create lasting change. q

Winter 2005 Making a Difference 17

Advocacy 101
On the Threshold of Change By Christina Carlton

P eople across Georgia are fighting for the disability community. Whether motivation begins with increased funding or changing an existing bill about institutions, advocates are demanding change from policymakers and they're not doing it by standing by quietly.

Legislative

How to Advocate for

Advocacy

Legislative Change

"Building up

relationships with legislators

1. Identify Your Issue

is the key," said Elizabeth

2. Know Your Issue

Appley, an attorney representing the Jewish

3. Network

Federation of Greater Atlanta on developmental disabilities

4. Learn about Legislation

at the Capitol. "The more

5. Build Relationships with Your Elected Officials

you strengthen that relationship, the more they'll want to help you

6. Establish and Maintain Visibility

in the future." Dawn Randolph, a fiscal

policy consultant and analyst

for several health and human

service organizations agrees.

"You have to be visible to get recognized," she

said. "Work toward communicating to the people

that can make the change and tell them exactly

what you want them to do and who's behind it."

It sounds easy coming from experts on

disability advocacy but can people in the

community really help make a difference?

18 Making a Difference Winter 2005

"Everyone has the opportunity to be a leader

and to step up when they're needed," said

Stephanie Guilloud, development director for

Project South: the Institute for the Elimination

of Poverty and

Genocide. According
to Appley and

"Work toward communicating to the people that

Randolph, advocacy can be achieved by

can make the change and tell them exactly

anyone. "The first step is to clearly identify

what you want them to do and who's behind it."

the issue," Appley

said. The issue she refers to is a matter of legality.

Which bill would you like to see changed or how

should funding be increased for a program? How

many slots should be increased in the next year for

the waiting lists for home and community services?

Once the issue has been identified, it's

important to know it well. Arguments for and

against the issue, main talking points and the

latest updates on the issue should all be researched

Elizabeth Appley (right) advocates for people and seniors with disabilities at Peach Politics on March 9, 2004 with Georgia Secretary of State Cathy Cox (left) and Representative Nan Orrock (middle).

Teach Me, Please!

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

that they needed to advocate for Claire's best interests.

Partners in Policymaking by the Atlanta Alliance

on Developmental Disabilities helped show O'Brien

how to do that.

"It was extremely intense, very emotional and

well worth it," O'Brien said.

For over a year, she learned how to communicate

with decision makers such as legislators and how to

network with others locally and statewide for change.

O'Brien was impressed by the quality of resources she

was given to learn from.

"They didn't just have speakers they had the best

speakers from all over the United States once a month,

from morning until night," she said. "Our homework was

to write letters and to speak to politicians about issues."

Most of all, O'Brien learned that advocacy is more

effective when a group of people with similar issues

work together.

"I used to just focus on my daughter's disabilities.

What I've learned is to focus on the community and

what affects it and not just my daughter," she said.

So how is O'Brien, class of 2000, using her Partners

skills today?

"I used to just focus on my

Currently, she is the director of

daughter's disabilities.

her local ARC and

What I've learned is to

served as an exofficio member of

focus on the community the Governor's

and what affects it and

Council on Developmental

not just my daughter."

Disabilities. She

Dee Dee O'Brien (left), became the director of her local ARC after graduating from Partners in Policymaking. Here, she presents an award to Dr. Paulette Taylor on behalf of the Satilla ARC.
also feels that Partners in Policymaking is an invaluable program, but realizes that not everybody can attend and is trying to open other outlets for education.
Her most recent education initiative is local law training for advocates. Members of the ARC are permitted to sit through law classes at Waycross College to get more detailed information about how the legal system works.
Also, as director of the Satilla ARC, O'Brien is becoming more community focused. Under her leadership, membership has tripled in the past year, and the new members don't all have people with disabilities in their families.
"We have people joining the ARC and walking with our disability issues that don't have disabilities, which is very different than how things used to be," O'Brien said.
She feels that these people often have more pull with politicians since they say disability rights are good for the community as a whole, and not just a personal crusade. "You don't have to have disabilities to care," she said.
For more information about how Partners in Policymaking can help you advocate, visit www.aadd.org or email Dave Blanchard at dave@aadd.org. q

before talking to a legislator. "However, people shouldn't feel intimidated not to advocate because they don't have all the details," Appley said.
When it comes to advocating though, it's better to do it in a group. "It's hard to be the lone voice in the wilderness," Appley pointed out.
The next step after identifying the issue of importance is to get hooked into a network of people who are concerned with the same issue. "Contact organizations like GCDD (Governor's Council on Developmental Disabilities), AADD

(Atlanta Alliance for Developmental Disabilities), ARC of Georgia (an organization that focuses on a united advocacy for people with disabilities), DHR (Department of Human Resources), advocacy attorneys and other organizations they're the most powerful voices you can have speaking for you," Appley emphasized. A few other organizations to check out are the Coalition United for Responsible Budget (CURB), Unlock the Waiting Lists!, disABILITY link, the Statewide Independent Living Council (SILC) and ADAPT.

Winter 2005 Making a Difference 19

FEATURE

Randolph agreed, "People need to come

together to help elected officials understand the

importance of services for people with disabilities."

The next step to effective advocacy is to work

with your organization to find out about

legislation. This is the type of information

you'll communicate to your elected official

"It would be

like, "vote yes here," or "oppose this

amazing if every

language." Most advocacy organizations will send out related email alerts about

person just took the issue at hand. Visitors to

the responsibility

www.legis.state.ga.us can find out what legislation has been prefiled for an

to talk to their

upcoming session or what meetings

elected officials."

are being held in advance. The next step is where people actually

make advocacy happen. Up to here, it's

been a research project with occasional meetings.

Build a relationship with your elected official or as

Randolph puts it, "be visible." Once contact is

made with your officials, it's important to stay in communication with them. "The more you strengthen that relationship, the more they'll want to help you in the future," Appley said. "It's not important to have all the details, just contacting your senator and letting him or her know what's on your mind is the first step."
But who do you contact? You can find your elected representatives and senators by visiting www.vote-smart.org and entering your zip code. Appley reminded advocacy beginners that state legislators will change on January 10, 2005. In addition, Appley suggested that it is important to form relationships with the governor and lieutenant governor, the leadership on both sides of the House and Senate (both Democrat and Republican) and members of committees that have responsibilities for the issue of concern. Of most significance to the disability community are the

When Should You Organize?

Sample Advocacy Letter

As emphasized by many advocacy experts, starting an organization isn't appropriate if one dealing with the issue at hand already exists.

Dear (insert name of legislator):

IroseImfheccpftroaeolravIasoviiyvtcecmvdekeihtododshsaoevetenvffevaoeosesftreatuetltroaw(-novrpfiteidaunecmcmiynseenmeesodigfvrnvreo,tieotendraImhectlsmoohoetdwmmaoyriavvsymmoiseacsuwcbueatbpoainnsnlepmtiiyeatetocimynnorey-itdmsenubw.masanmsatrsiueisIiteuttpyudinoat,pnhtnimoasgitaoyerswntn.fresovma,l,iiiritIcgwytbetiiwdhubhnsfoaelotogesmrusboneleltieioodsolicynttta)t,woaw.uInsiisledlh

friends are here.

Pbrleuemdagsaeeintsruienpqptuoherestitrtfhooewr nDweacpoivamertrmmsuleonntitstioesosf HapnuedompahlenavlReikeeasombuerecttecesarn

quality of life.

Sincerely, (insert your

name)

However, Dawn Randolph, a fiscal and policy consultant, recommends taking the following steps if there is no existing organization to join:
q Build a base of people who are interested in the issue q Get informed about the issue q Establish objectives and solutions for the next year q Take action
So how do you take action anyway? Find an identified target to take action against, look for a bill that needs to be changed or see what services need more funding. Then work toward communicating with the people that can make the change. "Tell them what you want them to do and who's behind it," Randolph said.
Stephanie Guilloud, development director for Project South, works in a capacity where she connects advocates to larger organizations with existing programs. She suggests checking out existing organizations rather than "reinventing the wheel." Then if no one else is dealing with an issue, an organization

should be established.

Guilloud concluded that advocacy organizations for people

with disabilities are stronger when people with disabilities are active within the

group. She said, "There are quite a few organizations led by people in the

disability community, and that's a very powerful position to effect change."

20 Making a Difference Winter 2005

ADVOCACY 101

following committees: Appropriations (money), Health & Human Services, Insurance, Children & Youth and Education.
Randolph noted that talking with your elected officials is a big first step, but it may be time consuming and overwhelming to try to form additional relationships with committee members or the governor. "It would be amazing if every person just took the responsibility to talk to their elected officials," she said. "You need to keep the visibility and communication year round not just while legislators are in session."
Advocacy Education
Another amazing tool for effective advocacy is education. Many organizations offer leadership and advocacy classes.
"I encourage people to come to advocacy training, to get hooked up to the developmental disabilities alert network, the state web site, the DHR web site and to call their legislator! It's the only way to make a difference," Appley said.
GCDD funds a variety of leadership programs, including Georgia Voices that Count, that it cosponsors with disABILITY Link; AADD's year-long program, Partners in Policymaking; and other educational opportunities offered by Project South.
"These programs together do a good job of building a strong base of educated leaders," Guilloud said. "They also create a space for leaders and organizers to come together and discuss tensions and challenges they face. If there's not a space to talk about what's going on, then we won't be able to continue effectively."
(continued on page 22)
Stephanie Guilloud holds a strategic organizing workshop for grass roots leaders at Project South, which she explains is often a different route to get rights for people with disabilities than legal advocacy, although the two methods often overlap.

10 Tips on

Talking to Legislators

11. Develop a relationship. The key to advocacy is developing long-term relationships with your
2 legislators. 2. Be optimistic and upbeat. 33. Be specific. Keep it simple. Try to discuss one issue at a time.

44. "Personalize" the issue. For example, if talking about funding for community-based services, describe why the issue is important to YOU and

your community. Use personal stories to inform

55.

the legislators they will be remembered. Don't be argumentative. Don't be defensive.

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

77. Provide good info. Give facts. Do not give a lot of materials. Fact sheets, brochures and personal letters are good.

88. It's important that the legislators can match a face with the issue. A great idea is to wear a button with your child's or family member's picture. Also, include a picture at the top of any letters with your name and contact information.

99.

Volunteer to be a resource contact. Legislators will always welcome a constituent who is knowledgeable on a specific issue and is willing

to be a local resource contact.

1010. Most importantly, always thank them and follow up with a thank you letter.

Submitted by Heidi Fernandez, GCDD Board Member

Winter 2005 Making a Difference 21

Organizing Basics
q Build Your Base
Identify who is most affected, communicate with the community, recruit members, build coalitions, create a membership structure, hold regular meetings02 and create a collective identity.
q Educate Your Base
Use experience and interactive workshops to educate members about the issues and help members identify as a collective working for change.
q Choose Your Goals
Identify the primary goals of the organization or group. Remember: goals are broad statements that describe what a group wants.
q Build a Strategy
Create a strategy based on achieving your immediate goals and preparing a foundation for long-term goals. Strategy is the overall plan to get the person who has the power to give you what you want.
q Implement Strategy
Develop an action plan that includes specific tactics. Each step should build on the last and toward the next to achieve your demands. Include a timeline that integrates fundraising, signing sponsors onto the campaign, media work, direct action, marches, education plans, etc.
q Evaluate Your Work
Whether the group wins or loses its short-term demands, evaluate the goals, strategies and tactics to determine strengths and weaknesses. Use the evaluation process to create the next steps of action.
This list was compiled by Project South. For more information, please visit www.projectsouth.org.
22 Making a Difference Winter 2005

Organizing

Guilloud pointed out that advocacy is just

one door in a hall of many doorways to

accomplishing goals in the disability community.

"There are a variety of strategies to change

the system to get what we need advocacy and

organizing are two of them," she said. "It's

important to distinguish between organizing and

advocacy to be able to distinguish how to best

go about getting what you want."

What's the difference?

"Advocacy is doing work to change a system

or a service on behalf of a group of people that

may or may not be part of the decision making,"

Guilloud said.

According to Guilloud, one good example of

advocacy at its best is Brown vs. Board of

Education. In its decision, the Supreme Court

ruled that racial segregation in schools (among

other places) was unconstitutional. Legal

advocacy landed this case in the Supreme Court.

According to Guilloud, while advocacy usually

focuses on a single policy change or budgetary

increase, organizing has the purpose of educating

people on a longer term basis.

Her example of good organizing was the

Montgomery Bus Boycott. A very well planned

boycott,

"Advocacy is doing work

African Americans

to change a system or a service on behalf of a

did not ride the buses for over a year,

group of people that may only giving

up when

or may not be part of

they were

the decision making."

awarded full racial

integration

on the buses. The party that had organized the

boycott sent out communications to the

community to bypass the public buses while

putting alternative transportation in place to

ensure an effective boycott.

Guilloud feels it is important to connect

today's struggles with historical struggles to find

which strategies will best help the disability

community find equality.

Since many organizations use a combination

of strategies, it is important to "connect the

education component to a specific action,"

she said. q

Disability Rights Community
Olmstead Decision Loses Trail Blazer By Valerie Meadows Suber
Elaine Wilson (1951- 2004)

T hose who live with developmental disabilities know well the story of the Olmstead Decision, and it is heartfelt. The story is a legend of two courageous women, Elaine Wilson and Lois Curtis,

both diagnosed with developmental disabilities

and mental illness, who pursued their hope and

dream of returning to the community, and opened

wide a door that would change the way thousands

would live out their lives.

Elaine Wilson,

53, passed away Wilson stepped into

December 5, at Grady Memorial Hospital in

history when she and Curtis filed suit

Atlanta. She lived seeking release from

five years free of institutional isolation in a

a life sentence of institutionalized care.

community-based

living environment made possible by the landmark

U.S. Supreme court ruling known as the Olmstead

Decision which she helped spearhead.

Wilson stepped into history when she and

Curtis filed suit seeking release from a life sentence

of institutionalized care. They wanted to return to

a community setting. Their doctors agreed it would

be healthier for them to do so. But the state of

Georgia said it would be too costly.

June 22, 1999, the U.S. Supreme court sided

with the two women. The Olmstead Decision

recognized that unjustified isolation is properly

regarded as discrimination based on disability

and that confinement in an institution severely

diminishes the every day life activities of

individuals, including family relations, social

contacts, work options, economic independence,

educational advancement and cultural

achievement.

Today thousands of Americans have benefited

from the trail blazing contribution of Elaine

Wilson and Lois Curtis. Still many wait.

A developmental disabilities advocate with

People First of Georgia, Gail Bottoms wrote their

story into poetry because, she said, "Elaine will

be remembered for what she did for us." GCDD

honors the memory of Elaine Wilson; a pioneer

in the nation's disability rights movement. q

~ To Elaine and Lois ~
There were two women, Elaine & Lois In an institution that wasn't their choice. They wanted out so they used their voice.
To make a difference was their plan, To help themselves and their fellow man. They hired the lawyers who said "we can," and went to fight, their future to plan. Elaine and Lois went through a big fight, to set folks straight and put things right.
To tell institutions to go fly a kite, To live in their community is a God-given right.
They convinced the judge they could live on their own, Make their own choices and have their own home. Thanks, Lois, Thanks, Elaine. Your action has made it even more plain. Stand up for yourself, a self advocate be. There is nothing to lose and everything to gain. So tonight we honor you both
for what you have done. You fought with the system and thank God you won!
August 5, 1999 Gail Bottoms
Former President, People First of Georgia

Winter 2005 Making a Difference 23

Destination

Equality By Christina Carlton

2004 MAD Discovery Tour

Making a Difference Discovery Tour participants learned about the disability rights movement and

M useums. Malls. Amusement parks. All come to mind when a tour bus is on the move. But what does equality have to do with it? On September 30, 2004, the

how they could help

Governor's Council on Developmental Disabilities

make a difference.

(GCDD) used a tour bus to educate the community

about the current civil rights movement disability

rights. People with various backgrounds joined the

tour by special invitation, and learned about the

movement and how they could help make a

difference in the disability community.

The Making a Difference Discovery Tour kicked

off at the Martin Luther King, Jr. Historic Site in

Atlanta with a speaker experienced in more than

one civil rights movement. Kate Gainer of

disABILITY LINK, the center for rights

"Don't treat people

& resources, borrowed the original

with disabilities like they're special . . .

slogan of the 1960s civil rights movement, "People First," and applied it to the disability rights movement.

have expectations

She called out for the community to

for us, we have expectations of you!"

notice that people with disabilities are in fact, considered unequal and they are demanding to be treated

like every other member of society.

"There's a `60s song that says something about a

revolution going on and it isn't being televised.

There is a revolution and it's not being televised!"

Gainer also discussed the Americans With

Disabilities Act of 1990 to support her point. The

act was established to provide a comprehensive

understanding of the prohibition of discrimination

of people with disabilities in critical areas such as

employment, housing, education, transportation,

health services, voting and access to public services.

"Congress gave the country a two-year grace

period [to adjust] because

Congress knew the country

wasn't ready. It was a novelty

to see us on the street, driving

cars, using public transportation.

After the 14th anniversary of

the Act, it's still a novelty to see

us working . . . to see us

functioning in society." She

attributed that to the media and

society sensationalizing people

with disabilities actually working. "Don't treat people with disabilities like they're special . . . have expectations for us, we

Kate Gainer of disABILITY LINK, kicks off the tour.

have expectations of you!" she said.

Gainer ended her rally for support by saying,

"I was raised to believe in the American dream

to be a productive member of society."

Destination One:
Visitable Neighborhoods
Visitability. Is this a real word? Eleanor Smith, the matriarch of an organization called Concrete Change, explained that this tonguetwister, new enough to be unmentioned in the American dictionary, came out of the disability rights movement in England. It refers to homeowners without disabilities living in houses that people with disabilities can visit. Many people with disabilities have never been able to visit their neighbors or even relatives because their houses don't have bathrooms on the main floor with enough space to fit a wheelchair into, and have entrances with steps and narrow doorways.
"All my life, I lived where I couldn't go next door . . . until this community was built. It's been wonderful going next door for the first time in my life," Smith said.
Insisting that visitable housing is good not only for people with disabilities, but also for anybody, GCDD Executive Director Eric Jacobson told of a time when Senator-elect Johnny Isakson showed his home to a lineman in the NFL. When he walked through a door, he had to turn sideways.

24 Making a Difference Winter 2005

Smith agreed that more typical families would

benefit from houses built to be visitable. Parents

with strollers appreciate the no-step entrance as

well as wider doorways when carrying groceries.

One homeowner in the community was pleased to

have a visitable home when she hurt herself and

was confined to a wheelchair for a few months.

She could navigate comfortably into the front door,

through the doorways, and have enough room to

fit the chair in the bathroom. Also, if there is a

bedroom on the main floor, these houses are more

valuable as people can age in place.

Some people however, are voicing their

concerns. Doesn't it cost more money to build a

visitable house? Smith claims it only costs a small

amount of money; the built-in elements such as

wider doors actually make the houses more

attractive and raise the value of homes when

owners are ready to resell. "For six dollars, a door

can be made

" All my life, I lived where I couldn't go next door . . . until this

wider instead of $600 to widen it later," she said.

community was built. It's been wonderful . . ."

After founding Concrete

Change, Smith

helped create a coalition that established the

EasyLiving Homecm Program. Builders register with

the organization and get a certificate when a home

is built with basic access features. These homes

aren't just visitable they accommodate people

with disabilities who live there. "That's the kind

of housing we need to concentrate on," said tour

attendee, Nancey Green Leigh, a professor in the

College of Architecture at Georgia Tech.

For more information on these programs,

visit www.concretechange.org and

www.easylivinghome.org.

Destination Two:

Inclusive Religion

Many places of worship provide various support

for people with disabilities during their services

but what about the rest of their programming?

"Traditionally, people cannot physically get in," said

Jacobson. "Churches have not been programma-

tically accepting they would provide assistance

to get through the service, but were not inclusive."

In a trip to the Central Congregational Church

of Christ, the people on the tour learned about

how churches or synagogues can be "Open and

Affirming." The Church's focus is to include

families and individuals of all backgrounds.

Senior Minister Budd Friend-Jones talked about

the different cultures that congregate for worship.

"There are people that hug . . . people that shake

hands . . . and people that bow," he said, stressing

that the church is inclusive of everybody.

The church wasn't always so accepting,

however.
"Churches have not been Until about

programmatically accepting they would provide assistance to get

two years ago when a major renovation occurred, the

through the service, but were not inclusive."

church focused on acceptance, but hadn't

considered

people with disabilities. When accessibility came

up as an issue during the project, the church's first

response was that they didn't need to worry about

it because none of their members had disabilities.

They quickly moved from avoidance to acceptance

when they realized that some former members had

stopped coming because of acquired disabilities

and an inability to get into the church.

Ken Johnson, the architect for the renovation,

helped make the Central Congregational Church of

Christ building accessible. During the planning

process, Johnson and others decided "the entrance

for people with disabilities should not be separate

from the main entrance," an important

The Central Congregational Church of Christ leveled its parking lot to make entering in a wheelchair much safer for members.
Ken Johnson, architect for the renovation at the Central Congregational Church of Christ, explains how their goal was to allow members with disabilities to fully participate in all programs.
Eleanor Smith, the founder of the EasyLiving Home program, leads the tour of these visitable homes featuring step-free entrances, wider doorways and bathrooms on the first floor (photo at left).

Winter 2005 Making a Difference 25

Destination Equality

consideration when working toward inclusion. The church's renovations included an elevator, automatic openers for doors, bathrooms with a larger space for wheelchairs, improved fire escapes and perhaps the most significant part of the project took place in the parking lot. Originally, the parking lot had been equivalent to a roller coaster without brakes for people who use wheelchairs. The church leveled the parking lot to make entering church in a wheelchair a much safer experience.
Today, the church has many members with disabilities that are able to fully participate in all programs. However, Friend-Jones claims that they're not finished yet. "We're still aware of the barriers in this building and are working hard to improve them."

Destination Three: Equal

Employment & Education

Most people have a grocery store down the

Barbara Sverdlik, director of nursing for Emory Healthcare,

street with a bagger that has a disability. It's the standard disability job. But what about people with disabilities who have abilities to do more? Dianne

helped bring the employment program Project SEARCH to

Prindle of Briggs & Associates employment agency helps people with disabilities find jobs that suit them, instead of placing them in a cookie cutter job

Georgia.

for people with disabilities. "We work hard to find non-traditional work outlets," she said.

One job candidate, Peter McKinnon, went to

work for the Buckhead office of Marsh USA, the

world's leading risk and insurance services firm.

During the job planning process, Julie Christensen,

vice president, took an in-depth look at what he

was capable of. "We didn't want to just create

tasks, we looked at the value he could provide," she

said. According to Christensen, McKinnon

Most people have a grocery store down the street with a bagger that has a disability.

faithfully serves in his capacity of inventory control, never missing a day. He has his own cubicle and feels like part of a team. Since Peter was hired,

It's the standard disability Tom Flynn, VP at the time and the

job. But what about people

"Champion" of the company says, "They're [people with disabilities]

with disabilities who have the best employees you'll ever have."

abilities to do more?

Another success story is an employment program called Project

SEARCH. The hospital unit where the program was

started has increased its employment of two people

with disabilities to 56. Briggs & Associates worked

with Barbara Sverdlik, director of nursing for Emory

Healthcare, to bring the Ohio-based program to

Emory Crawford Long Hospital in Georgia, which was

just recently implemented. For more information on

Tom Flynn, executive vice president and Julie Christensen, vice president of Marsh USA, discuss the value of employing people with disabilities.

customized employment, see resources on page 28.

Where do people with disabilities start? How do

they find out that they are part of the community

not an attachment? Hopefully schools help people

do this at an early age. Sadly, many students don't

believe in themselves and dream about the future,

leaving them unprepared for the commencement

of the rest of their lives.

However, GCDD's Project of National Signifi-

cance Grant given to eight schools in the state of

Georgia is enabling students with disabilities to plan

for the future. Cindy Saylor, the project coordinator

for the grant at Flowery Branch High School, said

the project has already changed lives.

"They're

taking tre-

Where do people with

mendous steps simply by learning how

disabilities find out what they're good at

to accept

. . . that they are part

themselves," she said.
The one-

of the community not an attachment?

year-old program

includes a self-determination class called Steps,

individual Futures Planning sessions and an after-

school Partners Club.

During the weekly Steps class, students with

and without disabilities collaborate to discover

how they can apply what they are good at to their

future. As a team, they brainstorm ideas on how

to make each other's dreams become reality.

A team of family, friends and a teacher combine

to form a Futures Planning team. They meet with

the student who has a disability to brainstorm how

to use abilities for future careers, volunteer work,

and community involvement. Then, a plan of action

is formed, implemented and evaluated.

The after-school Partners Club gives students

with and without disabilities a place to interact

with each other. Many friendships have evolved and

the students with disabilities are especially enjoying

their social expansion. "The kids with disabilities

used to sit at a separate table in the cafeteria, "

said Lori Oliver, a special education teacher at

Flowery Branch. "Now they're interspersed among

other students." q

26 Making a Difference Winter 2005

Self-Advocate Receives Waiver

StraightTalk

W hen Susie Edwards was growing up, the Americans with Disabilities Act did not exist. She graduated from high school and attended college, then expected to find a job and get an apartment.
"I started asking for employment services at 24 that I should have been looking for when I was 15. I didn't know to start earlier. VR didn't know what to do with me," Edwards said. As a result, she used all the service options she could with vocational rehabilitation and was determined to be unemployable. "At 43, I'm still looking for a job," she said.
That experience led Edwards, who has cerebral palsy, to participate in the Partners in Policymaking class held by the Atlanta Alliance for Developmental Disabilities (AADD) in 2001/2002. "At Partners I learned how to write a letter to the governor and how to ask for services," she said.
Through her Partners in Policymaking experience, Edwards learned more about the options available to her. Edwards, who lives with her parents, also started wondering what would happen to

her when her parents died. "I don't want to be a burden on my family. With the Independent Care Waiver Program (ICWP), I wouldn't have to go from my parents' dying to becoming my family's burden," she said.
In October 2002, Edwards decided to apply for the ICWP. In December of that year she was evaluated, then placed on the waiting list because there was no funding available for her waiver. While waiting for her waiver to come through, Edwards tried other avenues for support and services. "Respite hours were a disaster. My respite worker brought her boyfriend to the house," she said.
She also started advocating for herself and other people with disabilities by participating in several lawsuits, including one filed in early 2003 against the governor, the Department of Community Health and the Department of Human Resources. The suit challenges the state's policies that keep people in nursing homes or on waiting lists, instead of receiving waivers that would allow them to receive services and supports at home in their communities.
While she can't say for sure if her advocacy for herself and others helped

"At Partners I learned how to
write a letter to the governor
and how to ask for services."
her receive a waiver, in September of 2004, Edwards finally received her ICWP, after nearly two years on the waiting list.
And though she's excited to have her first step toward independence, Edwards said she still has battles to fight; in fact, the first personal care assistant (PCA) she hired quit before her first day. Edwards lives in Alpharetta, and not many PCAs live there. Other issues have also arisen.
"Now that I have the waiver, I need to know what questions to ask when I interview PCAs, what the requirements are for the care givers and how many supplies of gloves I'll need in the next six months," she said. "The case managers expect you to know all this stuff. They need to provide guidelines."
But Edwards won't give up on her hard-fought waiver, and will probably end up helping those who receive waivers in the future. "I'd love to create a handbook of what you have to do after you get the waiver," she said. q

Susie Edwards (bottom row, 2nd from left) learned to advocate for herself and others during her Partners in Policymaking class of 2001/2002.
Winter 2005 Making a Difference 27

RESOURCES
pg.8

pg.10

w w w. g c d d . o r g

pg. 12

pg. 18

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/
Georgia 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
Georgia Lieutenant Governor's Office
www.ltgov.georgia.gov/02/ltgov/ home/0,2214,2199618,00.html 404-656-5030
Department of Human Resources
http://dhr.georgia.gov 404-656-4937

Advocacy Organizations
ADAPT
www.adapt.org 303-733-9324
ARC of Georgia
www.arcgeorgia.org 404-634-5512
Atlanta Alliance on Developmental Disabilities
www.aadd.org 404-881-9777
disABILITY LINK
www.disabilitylink.org 404-687-9175
Governor's Council on Developmental Disabilities
www.gcdd.org 404-657-2126
Project South
www.projectsouth.org 404-622-0602
Statewide Independent Living Council of Georgia
www.silcga.org, 770-270-6860 Toll Free 888-288-9780 TTY 770-270-5671
Budget and GA's Waiting Lists
Georgia Budget and Policy Institute
www.gbpi.org
Unlock the Waiting Lists!
www.unlockthewaitinglists.org

Emergency Support
United Way Atlanta
www.unitedwayatlanta.org Dial 211 for support
Legislative Information
Project Vote Smart
www.vote-smart.org 406-859-8683
State Legislator Locator
http://www.sos.state.ga.us/ cgi-bin/locator.asp
Making a Difference Discovery Tour

Briggs & Associates
www.briggsassociates.org 404-290-6860
Central Congregational United Church of Christ
www.central-ucc.org 404-633-4505
Cobb/Douglas Community Service Board
www.cobbcsb.com, 770-429-5000
Concrete Change
www.ConcreteChange.org
EasyLiving Homecm
www.easylivinghome.org 770-270-1611
Georgia Department of Community Affairs Housing Initiatives
www.dca.state.ga.us (404) 679-4940

Building on a tradition of "quality and
caring"
770-394-9791 www.childrens-services.com

LD Made Easy Specializing in organization,
social skills, and handwriting problems. We solve "homework wars"
Author of "Learning Re-enabled"
Susan N. Schriber Orloff, OTR/L
Occupational Therapist, Registered and Licensed CEO/Executive Director Over 30 years experience Former resource teacher

28 Making a Difference Winter 2005

MEDICAL UPDATE

Early Testing Helps Determine Best Course of Action by Alan G. Weintraub, MD

Development is an ongoing process from birth. Although we are born fully formed, there are many changes expected. As a developmentalist, I see patients if their developmental milestones are not following

deficits, that impact on social functioning as well, such as autism spectrum disorders. We may identify motor impairments, like cerebral palsy, or behavioral and attentional disorders.
Developmental disabilities are lifelong. The milder

the "typical" path. To do so, we explore the five spheres

the disability the less likely it will impact significantly

of development including cognition, language/learning,

as your child matures, but the underlying process may

fine-motor, gross motor and personal social skills.

still be there. Because of this, we must understand that

Two common issues that surface in the first year of

there won't be a "quick fix." However, there are multiple

life are delays in motor development and language skills. appropriate therapies available.

These are "red flags" that should be explored

My role in treatment is two-fold. I serve as a "case

immediately.

manager" to assist the family in finding and coordinating

Because

care so we can get the child "back on track." The other

development is

is to prescribe, monitor and direct the specific treatments

a continuum,

to help the child overcome the disability.

we monitor well-

For example, children with communication disorders

described

require speech/language therapy. We will direct that

"developmental

therapy and monitor the child's progress. A child with

milestones." These

tonal abnormalities and motor impairment requires

are timeframes

physical therapy. Occupational therapy is utilized for

during which

treatment of motor coordination deficits. This also

children are expected includes sensory integration therapy, which addresses

to gain certain skills. ways to integrate sensory inputs into a cohesive,

If a child's skills are not developing as scheduled, we

coordinated motor output.

need to investigate. A developmental disability is a

Psychological intervention to assist the child (and

deviation from the normal continuum within any of

family) in coping with the emotional and behavioral

these five spheres.

ramifications of a particular disability is important.

I perform a comprehensive neurodevelopmental

Adaptive equipment such as braces, walkers or

assessment on children. This includes a comprehensive

wheelchairs may be needed, and pharmacotherapy may

history, physical and neurological

be necessary if there are behavioral or

examination. We do a neurodeve-

attentional issues that are not responding

lopmental assessment to identify the "By striving to reach to traditional psychological techniques.

child's functional level to obtain a profile of strengths and weaknesses.

maximal levels of

No one piece of this program will suffice. A well thought out program

Tests may be global, such as the Bayley Scales of Infant Development.

potential, we can

must incorporate a comprehensive multidisciplinary approach.

They may explore specific areas of development, such as language, with

assist our children

We are all unique. Even if two children have the same genetically

the Preschool Language Scale or the Peabody Picture Vocabulary Test. We

in becoming the

determined diagnosis, with similar IQs, they are still different. My goal is to help

examine nonverbal reasoning skills, with tools like the Columbia Mental

best they can be."

your child reach his/her maximal level of functioning, by removing the physical and

Maturity Scale, or eye-hand

cognitive impediments that may stand in

coordination with the Beery Scales.

your child's way.

After these tests are performed, we have a

A disability should not be a handicap. By striving

comprehensive sense of a child's skills. As necessary, we

to reach maximal levels of potential, we can assist our

can do laboratory tests, including cranial studies, genetic, children in becoming the best they can be. That should

metabolic and hormonal tests to clarify the diagnosis.

be your goal as a parent, and that is my goal as a

Frequently, children will have global cognitive

professional to assist you in uncovering the complexity

impairment. Alternatively, they may demonstrate

that is your child, and build skills for a lifetime of

primarily language-based disorders, or more broad based

maximizing fulfillment. q

Dr. Alan G.
Weintraub
is a board-certified Developmental-Behavioral Pediatrician who has practiced in Metro Atlanta since 1988. He trained at the Albert Einstein College of Medicine for both his general pediatrics residency and his developmental disabilities fellowship. He sits on several developmental disabilities committees in the metro area. His practice covers a diverse population including children with genetic disorders, cerebral palsy, autism spectrum disorders and complex ADHD. In 2001, Dr. Weintraub won the Lewis E. Jones MD Award from the Atlanta Alliance on Developmental Disabilities for his commitment to the DD population in metro Atlanta.

Winter 2005 Making a Difference 29

CALENDAR OF EVENTS

UPCOMING CONFERENCES

FEBRUARY
February 2 Healthy Mothers, Healthy Babies Coalition of GA
18th Annual Legislative Breakfast Atlanta, GA, 770-451-0020 www.hmhbga.org
February 4-5 A New Kind of Autism Spectrum Conference
Duluth, GA, 770-451-0954 www.asaga.com
February 7 Substance Abuse Day at the Capitol
Atlanta, GA, 404-523-3440 www.gasubstanceabuse.org
February 9 Early & Periodic Screening Diagnosis and Testing:
How to get what children need through existing & unused Medicaid Atlanta, GA, www.marcus.org RSVP: catherine.trapani@marcus.org
February 10 Inclusion of Students with Significant Disabilities
Kennesaw, GA, 770-423-6577
February 19 Dimensions of Dyslexia
Understanding and Promoting Reading Fluency, Atlanta, GA 404-256-1232, www.idaga.org
February 24 Disability Day at the Capitol
Atlanta, GA, 404-657-2126 www.gcdd.org
February 24-25 Health Care In Community Settings - Theory to Practice
Atlanta, GA, 770-956-8511 jnodvin@mayinstitute.org www.gcdd.org and click on "2005 National Health Care Conference"
February 28 Mental Health Day at the Capitol
Atlanta, GA, 404-527-7175 x231 www.nmhag.org
February 28 How to Facilitate a MAPs Session
Kennesaw, GA, 770-423-6577

MARCH
March 5-8 Easter Seals Project Action:
2005 Mobility Planning Services
Institute, Washington, DC
http://projectaction.easterseals.com and click on "Training & Conferences"
March 10 Oppositional Defiant & Conduct Disorder
Atlanta, GA, www.marcus.org RSVP: catherine.trapani@marcus.org
March 11-13 COPAA 7th Nat'l Conference
Atlanta, GA, 404-607-1600
March 15 & 23 Teaching English Language Learners
Kennesaw, GA, 770-423-6577
March 24 2nd Annual "Under One Roof" Housing Conference
Fort Valley, GA, 478-825-6954 www.ag.fvsu.edu/mainpages/ housing.asp

February 24-25 Health Care In Community Settings - Theory to Practice, Reducing Health
Care Disparities for People with DD
Health care providers will learn the evolution, challenges and expectations of health care services for people with developmental disabilities in community settings; examples of successful programs; strategies of care for people with complex medical and behavioral issues; how to ensure health care resources are accessible for aging adults with DD; and more. Consumers and family members are encouraged to attend.

APRIL
April 4-6 AAHSA Future of Aging Services Conference
Washington, DC, 888-508-9441 www.aahsa.org
April 12 & 26 Reading Strategies for Students with Disabilities
Kennesaw, GA, 770-423-6577
April 13 Vocational & Life Skills Planning for Young Adults with DD.

Atlanta, GA, www.marcus.org RSVP: catherine.trapani@marcus.org
April 21-22 GCDD Quarterly Meeting
Dublin, GA, 404-657-2126 www.gcdd.org
MAY
May 9-11 Nat'l Training Conference for Deaf and Hard of Hearing in Government
Washington, DC www.dhhig.org/ntc

SOUTHERN

C O M PA N Y

Proudly

Salutes

The 7th Annual Disability Day at the Capitol February 24, 2005

30 Making a Difference Winter 2005

Thanks to
OUR SPONSORS
for their Support.
If you are interested in being a sponsor for Making a Difference
magazine, please call Christina Carlton @ 770-578-9765

SPONSORSHIPS
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

Offering integrated, comprehensive, family-centered services for:
children with special needs and their families A child with special needs (from birth to age 21) can be referred to a Public Health Program that serves these children by calling: the Children 1st Coordinator at your local
health department at 800-822-2539 Parent to Parent of Georgia at 800-229-2038
or in Atlanta at 770-451-5484 http://health.state.ga.us/programs/specialneeds/
DIVISION OF PUBLIC HEALTH FAMILY HEALTH BRANCH
Winter 2005 Making a Difference 31

The quarterly magazine of the Georgia Governor's Council on Developmental Disabilities
Volume 5, Issue 3 Winter 2005

Join Other Advocates For
Disability Day at the Capitol
February 24, 2005

A dvocates from all over Georgia will meet with their legislators February 24 during Disability Day in Atlanta. This year's event, sponsored by the Governor's Council on Developmental Disabilities (GCDD), will be a prime opportunity to educate new legislators about the issues that affect the disability community.
The day will start with a rally at the Capitol, featuring stories from advocates and legislators, followed by a march to the Georgia Freight Depot for lunch with legislators. GCDD is also planning to offer some training on successful advocacy strategies. (Events subject to change.)
Visit www.gcdd.org for more information on this important day for Georgia's disability advocates. q

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