Making a difference [Vol. 6, no. 3 (Winter 2006)]

GEORGIA GOVERNOR'S COUNCIL ON DEVELOPMENTAL DISABILITIES
WINTER 2006
www.gcdd.org
Real Homes. Real Jobs. Real Education. Real Influence.

TABLE OF CONTENTS

24
Features
11
Advocacy: The Impetus Behind Positive Change
GCDD Unveils 2006 Public Policy Agenda GCDD's revised agenda-setting process will engage a broader constituency of organizations and individuals involved with disability advocacy.

14
Governor's Office Works to Modernize Medicaid
Georgia proposes to ease rising Medicaid costs with new health care delivery approaches focusing on preventive care.
18
Leaving Central State: Hundreds May Seek Community Living
DHR has proposed transitioning over 300 Georgians with developmental disabilities from Central State Hospital into the community a measure they say will improve quality of life.

24
Executives Discover People with Disabilities Can and Want to Work
Atlanta's executives witnessed people with disabilities working at real jobs and were challenged to find opportunities in their own
corporations for
11 the disability job market.
18

In Each Issue
3 Letter from
Governor Sonny Perdue
27 Calendar
Editorial Cartoon
29 Resources

Departments

4
GCDD Viewpoint
The Power of Advocacy The power of advocacy is actualized through direct action.
5
From the GCDD Chair
New Year Brings New Advocacy Opportunities. GCDD Chair urges community to become politically active.

6
Around GCDD
GCDD Hosts Seventh "Better All Together" Conference and Disability Day.
9
News and Events
Livable Lifetime Show House showcases universal design; Olmstead plaintiff displays art; Updated version of the Autism Spectrum Resource Guide now available; Magazine broadcast on radio.

2 Making a Difference Winter 2006

10
Straight Talk
Natalie Tumlin advocated for those who couldn't.
22
Perspectives
A new and veteran advocate share their thoughts on advocacy.
28
Legal Update
Discover how to assist individuals without removing fundamental rights.

Volume 6, Issue 3 Winter 2006
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.
Tom Seegmueller Chairperson
tms@dhr.state.ga.us
Eric E. Jacobson Executive Director eejacobson@dhr.state.ga.us
2 Peachtree Street NW, Suite 26-246 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
Brandon D Hunt Cartoonist

FROM THE GOVERNOR
To Georgia's Disability Community,
M y vision for Medicaid in Georgia is health care that promotes healthy lifestyles. For individuals who have a chronic or persistent illness, this means services that teach and assist individuals on Medicaid to manage their own health care conditions. For individuals who are at risk for developing chronic or persistent illnesses, our Medicaid system should be structured to teach personal responsibility for lifestyle changes that are preventive, avoiding the needless suffering that conditions like diabetes, heart disease and obesity cause. For our children, prevention is the key. We must identify health concerns early, and begin teaching the child and their parents how to make wise choices about health care.
With these goals in mind, we need a new approach for providing health care; we need to bring the doctor/patient relationship back to the front and center of decision-making. This relationship should provide our Medicaid-eligible citizens the health care services they need, no more and no less. We need health care decisions to be made based upon what research shows is effective treatment, in the most cost efficient manner. When given information on the effectiveness of treatments and the costs of treatment, I am confident individuals on Medicaid can make the right choices for their health care needs.
I have heard from groups opposing changes to Medicaid, claiming the state is limiting federal funding, looking at cutting needed services and reducing eligibility. They even claim that our citizens on Medicaid cannot make their own health care decisions. None of this is true.
The truth is our Medicaid transformation effort is about improving health for Georgians on Medicaid while we also control unsustainable health care costs in ways that make sense. We know that health is improved by using prevention services, improving health literacy, making treatment available at the right time and in the right places and, when needed, assisting individuals to manage their health care. These are the same ideas we have heard from many of you who have joined us in this transformation work.
My hope is we will continue to work together to improve Medicaid because Georgians on Medicaid deserve to be involved in a health care system that will allow them to make decisions that will truly improve their health and quality of life.
Sonny Perdue Governor
www.gcdd.org 3

GCDD VIEWPOINT

The Power of Advocacy

A s we begin a new year and another legislative session, it is time to reflect on the past and prepare for the future. While we have had some successes during the past year, there is no time

to simply declare victory and relax. We do not have that

luxury. There is much work still to be done.

We must begin thinking about how we as the disability

community are organized to create the social and policy

changes that we desire. We need to begin thinking about

not only how we advocate, but how we

organize and create coalitions that include

others with common interests. I recently

attended a training session where I learned

the principles of "direct action." Direct action

is about challenging the existing power

relationships by changing what is happening

and how people act together. It is about

people with developmental disabilities and

their families coming together to develop

solutions to problems that meet their needs.

They can do this by joining with others and

using their numbers to pressure the system to

change.

We can work together and with others to

win real and immediate changes that improve

people's lives. During the legislative session, we will

continue to work to Unlock the Waiting Lists! and support

efforts to fund 1,500 new waivers for the Mental Retardation

Waiver Program and 152 new waivers for the Independent

Care Waiver Program. We can close buildings at Central State

" We need to begin thinking

Hospital and move people into the

about not only how we advocate, community with

but how we organize and create

Money Follows the Person legislation. We

coalitions that include others can make sure that

with common interests."

the over 150 children currently living in

public and private institutions come home to loving and

stable families. These are changes that we can make happen

during this legislative session.

We can work together so that all those involved have a

sense of their power. There are many opportunities for you,

your family and your friends to come to the Capitol and let

your legislators and elected officials know what is important

to you. You can join People First of Georgia in supporting

legislation that will allow money to follow the person for

those leaving institutions or Unlock the Waiting Lists! to

support increased funding for services and supports. You can

join with direct support professionals in trying to get better wages and benefits. You can come to the Capitol on Disability Day (February 23, 2006) and be a part of the more than 1,300 individuals who will let their voices be heard.
We can alter the relations of power by making sure individuals, and when appropriate, their families, have control over their lives. The new waivers currently being written by the Division of Mental Health, Developmental Disabilities and Addictive Diseases will put individuals and families more in control over the supports purchased and who provides those supports. New options such as a Medicaid Buy In will allow people to work and continue using Medicaid as the payer for health care and supports. And, we can support legislation that will ensure that all places where people vote are physically accessible so that everyone can participate in our civic responsibility to vote during upcoming elections.
Nelson Mandela once wrote, "Our deepest fear is not that we're inadequate, but that we are powerful." We can come together and show that as a community we are indeed powerful. Make sure that you are among those in attendance at Disability Day at the Capitol AND also make sure that your legislators are in attendance and know about our issues. Call them today and tell them you expect to see them on February 23. Make an appointment to see them that morning and ask them to support the budget and legislative issues you will read about in this edition of Making a Difference. Finally, ask them to sit with you at lunch at the Freight Depot. You can help us win immediate improvements in your life, experience the sense of power when we all come together, and alter the relationships that will result in the system recognizing this is about YOUR life.
Finally, we encourage you to write thoughtful responses to specific articles published in Making a Difference magazine. Please allow us the opportunity to print your opinions by e-mailing "Letters To The Editor" at vmsuber@dhr.state.ga.us.
I look forward to seeing each of you at Disability Day at the Capitol, February 23. Your calls and e-mails are always welcome. You can reach me at 1-888-275-4233 or you can e-mail me at eejacobson@dhr.state.ga.us
Eric E. Jacobson Executive Director, GCDD

4 Making a Difference Winter 2006

HOW TO REACH US

FROM THE GCDD CHAIRPERSON

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.
Contact Our Editor:
Valerie Meadows Suber, vmsuber@dhr.state.ga.us, 404-657-2122, Fax 404-657-2132 or: 2 Peachtree Street, NW, Suite 26-246, Atlanta, GA 30303-3142
Audio or Large Print Versions:
For an audio version of Making a Difference, please contact GCDD. A large font version is available for download at www.gcdd.org.
Sponsorship:
For sponsorship opportunities contact: Christina Rosell 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 our policy to publish readers' comments. Contents do not necessarily reflect the opinions of GCDD, the editors or state government.

New Year Brings New Advocacy Opportunities

F or many, the New Year brings thoughts of stereotypical resolutions and renewed commitment. For those of us living in the World of Disabilities, the

New Year brings thoughts of political activism in

the coming legislative session. For some, the

political process and the thought of becoming

involved are either unpleasant or intimidating.

Others have little or no faith that their actions

will make any difference.

However, to quote former Atlanta Mayor

Maynard Jackson, "Politics is not perfect, but it's

the best available nonviolent means of changing

how we live." Therefore, for those of us seeking

change, it is once again time to roll up our

sleeves and become politically active.

In this issue of Making a Difference you will find GCDD's legislative agenda for

the coming session. We realize that this agenda does not address all the concerns

that individuals across the state may have. However, our prioritization of these

issues is directly related to not only their significance, but also the potential for

positive change.

If you have never been a part of Disability Day at the Capitol, I urge you to

come to Atlanta on February 23, 2006 and join disability advocates from all across

Georgia for a powerfully unifying experience. Please look for the Disability Day at

the Capitol registration

"... for those of us seeking change, it is form on page 7, fill it

once again time to roll up our sleeves

out and mail or fax it to our office. For more

and become politically active."

details on this, call GCDD

or visit our Web site at

www.gcdd.org. The site is also an excellent way to stay abreast of the progress

relating to our agenda during the official proceedings of the general assembly. Our

legislative fact sheet, Moving Forward, is updated weekly and available online to

keep you informed.

You CAN make a difference. Personal advocacy has had a direct impact on

dramatic changes relating to waivers, the waiting lists and other issues during

recent legislative sessions. I believe that it is worth reiterating that if those of us in

the disability community all spoke up in unity, we would be one of the largest

MAJORITIES in the political system today. Your involvement in this process can truly

make a difference. Help us. Help yourself. Help those you love.

Tom Seegmueller Chairperson, GCDD
www.gcdd.org 5

AROUND GCDD

GCDD Hosts Seventh "Better All Together" Conference

Since 1994, the Georgia Governor's Council on Developmental Disabilities has joined

with students, parents and educators to learn how to successfully support students and

school personnel so students could be successful, contributing members of local schools by

hosting the Better All Together conferences.

Better All Together #7: Inclusion Works! on March 1-4, 2006, celebrates the past six

conferences and continues to include topics about educational inclusion as well as inclusion

and contribution in community life after graduation from school. The conference offers

sessions that will help participants learn how to include young people with disabilities

during their school years and provides sessions that demonstrate what is possible for young

children before school age and for adults as they graduate from high school.

Many experts from Georgia and around the U.S. and Canada will present a wide variety

of sessions on:

Early childhood inclusion

School inclusion

Curriculum modifications

Supported living

Supported employment

Community building

Teaching strategies

Assets-based community development

Person-centered planning

Each day will include sessions on both education and adult issues from recognized

experts, including Dr. Stephen Hall, director of Georgia's Office of Developmental Disabilities

of the Department of Human Resources, Division of Mental Health, Developmental

Disabilities and Addictive Diseases. Cary Griffin, an expert in customized employment;

Kathy Everett, a parent of a child with a disability and a special education teacher; and

self-advocate Gail Bottoms are just three of the speakers who will reveal their strategies for

success during the conference. In addition, students, adults with disabilities and parents of

children with disabilities will share their experiences and lessons from school, work and

community life.

The conference will be held at the University of Georgia Center for Continuing

Education in Athens. For more information, or to register, call 706-542-2134 or

800-884-1381 or visit www.gcdd.org.

Co-Sponsors
The Arc of Satilla The Arc of Walker County Bright from the Start: Georgia
Department of Early Care and Learning Brain and Spinal Injury
Trust Fund Commission CDAG: Community Developers
Association of Georgia Department of Human Resources - Office of Developmental Disabilities GAO: Georgia Advocacy Office Georgia Department of Education - Division for Exceptional Students IHDD: Institute on Human Development and Disability

6 Making a Difference Winter 2006

CONFERENCE SCHEDULE
Wednesday, March 1, 2006 9 am - 12 pm .................... Direct Support
........................Professional Meeting 11:30 am - 5 pm .. Conference Registration 1 - 2:30 pm.................. Welcome/Opening
Keynote: Robin Ervin and Tom Glennon 2:30 - 3 pm .................................. Break 3 - 5 pm ...................... Breakout sessions 5 - 7 pm .................. Dinner on Your Own 7 - 8:30 pm ................ Evening Keynote:
....Solomon, Simmons, Everett, O'Prey 8:30 pm........................................ Social
Thursday, March 2, 2006 7 - 8:30 am ............ Continental Breakfast 8 am - 5 pm ........ Conference Registration 8:30 - 10 am ...... Keynote: Dr. Pat Cooper 10 - 10:30 am................................ Break 10:30 am - 12 pm ........ Breakout Sessions 12 - 1:30 pm.................... Lunch Provided 1:30 - 3 pm.................. Breakout Sessions 3 - 3:30 pm .................................. Break 3:30 - 5 pm.................. Breakout Sessions
Friday, March 3, 2006 7- 8:30 am .............. Continental Breakfast 8 am - 5 pm ........ Conference Registration 8:30 - 10 am ......Keynote: Dr. Stephen Hall 10 - 10:30 am................................ Break 10:30 am - 12 pm ........ Breakout Sessions 12 - 1:30 pm.................... Lunch Provided 1:30 - 3 pm.................. Breakout Sessions 3 - 3:30 pm .................................. Break 3:30 - 5 pm.................. Breakout Sessions 5 - 7 pm .................. Dinner on Your Own 7 pm ............................................ Social
Saturday, March 4, 2006 7 - 8:30 am ............ Continental Breakfast 8 - 8:30 am ........ Conference Registration 8:30 - 10 am ................ Breakout Sessions 10 - 10:30 am .............................. Break 10:30 am - 12 pm ........ Breakout Sessions 12 - 1:30 pm.................... Lunch Provided 1:30 - 3 pm ... Closing Keynote: Tom Kohler

DISABILITY DAY

Disability Day at the Capitol Your Vote Makes a Difference! February 23, 2006
Join the Governor's Council on Developmental Disabilities at the Georgia Capitol for: Advocacy training from representatives of
Partners in Policymaking and the Unlock the Waiting Lists! campaign A rally to let legislators know how their decisions affect people with disabilities Updates from local grassroots leaders Opportunity to eat lunch with legislators from across the state
For more information,
visit www.gcdd.org or call 404-657-2126.

Make YOUR voice heard attend Disability Day at the Capitol February 23, 2006!

ATTENDEE RSVP FORM Disability Day at the Capitol February 23, 2006
Please register to attend the luncheon. RSVP: 404-657-2126, Toll Free 888-ASK-GCDD, FAX 404-657-2132, TTY 404-657-2133, or www.gcdd.org
Name: ________________________________________ Organization: __________________________ Total # attending: ________
Mailing Address: ________________________________________________ City: ________________________ Zip Code: ________
E-mail: ____________________________________________________________ Telephone:__________________________________
Optional $10.00 donation per person to support luncheon is appreciated, but not required. Total payment amount: ____________ Total amount enclosed: _______________ Please make check payable and return to: Governor's Council on Developmental Disabilities Disability Day Registration 2 Peachtree St. NW, Suite 26-246, Atlanta, GA 30303.
Please note special accommodations we should be aware of: __________________________________________________________ ________________________________________________________________________________________________________________ ________________________________________________________________________________________________________________ ________________________________________________________________________________________________________________
www.gcdd.org 7

DISABILITY DAY

SPONSORSHIP FORM Disability Day at the Capitol February 23, 2006

GCDD hosts Disability Day at the Capitol each year to link people with disabilities with their local legislators. Your support helps people with disabilities tell their stories to policymakers and move Georgia toward a better quality of life for all citizens.
H Yes! My organization will co-sponsor Disability Day at the Capitol (check desired sponsorship level):
H $10,000: Full-page advertisement in Making a Difference magazine, name on banner and program, reserved VIP seating, exhibit space.
H $5,000: Half-page advertisement in Making a Difference magazine, name on banner and program, exhibit space.
H $2,500: Quarter page advertisement in Making a Difference magazine, name on banner and program, exhibit space.
H $1,500: Name on banner and program exhibit space. H $500: Name on banner and program. H $150: Name on program.
H Yes! I will attend Disability Day at the Capitol.

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

H Check enclosed

H Please invoice

Name: ________________________________________________________ Title: __________________________________________ Organization name exactly as you wish for it to appear on event materials: __________________________________________________
______________________________________________________________________________________________________________ Address: ________________________________________________________________________________________________________ City: ______________________________________________________ State: ______________________ Zip: ________________ E-mail: ____________________________________________________ Telephone: ________________________________________

RETURN TO: Governor's Council on Developmental Disabilities Attention: Disability Day
2 Peachtree Street NW, Suite 26-246 Atlanta, GA 30303 Or fax to 404-657-2132

8 Making a Difference Winter 2006

NEWS & EVENTS

Livable Lifetime
Show House
Opens in March
The 2006 Livable Lifetime Show House, which showcases universal design features, will be open for tours every day but Sunday March 11 - April 1 in Fayetteville, Ga., in the Emory Springs Community on Hwy 54. Presented by the Universal Design Alliance, the home will highlight many design elements that produce a convenient, safe and flexible home that can meet the changing needs of individuals and families throughout their lifetimes.
The Universal Design Alliance is a nonprofit organization dedicated to educating the public on the benefits of both interior and exterior home features that promote lifetime enjoyment. It has teamed with Bob Adams Homes to create this show home that includes many examples of accessible features for people of any age or ability.
The Show House will demonstrate the talented skills of interior designers trained in "multiple life stage design" and will include many ideas not commonly available in homes at this time. In addition, workshops, seminars and special events are planned to help educate consumers on the benefits of a livable, lifetime home.
The Show House will benefit the EasyLiving HomeCM Coalition and the Universal Design Alliance. Tickets are $5, groups of 20 or more are $4 each.
www.universaldesign.org
Olmstead Plaintiff
Shows Art
Lois Curtis, who took her fight to live in her community all the way to the U.S. Supreme Court, recently showed her artwork in her first exhibit called, Ms. Curtis, it's a pleasure to meet you.

The exhibit, held November 11 December 23 at the Temple Gallery in DeKalb County, celebrated Curtis' journey from institutionalized isolation to community inclusion.
Curtis spent most of her adolescent and adult life as a resident in various state-run institutions for people with disabilities. After her repeated requests to reside in the community were denied, Curtis' 1999 suit against the State of Georgia came before the Supreme Court. Victorious, the
Curtis' art was on display at the Temple Gallery.
landmark Olmstead Decision became the national mandate to free tens of thousands of people with disabilities from unnecessary and unjust institutionalization.
Today, Curtis receives community-based support and makes art and advocacy her life's work. With pastels and acrylics, Curtis' expressions are bold and emotionally straightforward. Her remarkable insight into people and her joy for life are powerful reminders that everyone has dreams and contributions to make.
The Temple Gallery, sponsored by the DeKalb Council for the Arts, is a nonprofit gallery committed to bringing innovative art and artists to the community.
New Autism Guide Available
The Governor's Council on Developmental Disabilities, in partnership

with the Autism Society of America's (ASA) Greater Georgia Chapter, has developed an updated version of the Autism Spectrum Resource Guide. The guide includes:
Where to Find Resources in Spanish
Where to Find Information on Getting A Diagnosis and/or Evaluation
Where to Find Information on Professionals, Therapy and Treatments
What to Expect After You Get a Diagnosis
Where to Find Information on Providers, Respite and Other Resources
Where to Find Information on Financial Assistance Sources
Where to Find Information on Future Planning
Where to Find Information on Supported Living and Residential Facilities
The new resource guide is available for download from www.gcdd.org. Alternative formats are available upon request.
Magazine Now Broadcast
The Governor's Council on Developmental Disabilities is proud to announce Making a Difference magazine is now read and broadcast on the radio bandwidth of the Georgia Radio Reading Service (GARRS) weekly, every Thursday at 8:30 AM and on Saturdays at 10:00 AM and 10:30 AM. Listen online at www.garrs.net or call 404-685-2820 for information on how print-challenged individuals can receive a program guide and a special radio receiver free or for a nominal donation. The Georgia Radio Reading Service covers the entire state of Georgia and has approximately 20,000 listeners. G

www.gcdd.org 9

StraightTalk
Natalie Tumlin: By Valerie Smith Buxton
Advocated for Those Who Couldn't
E ven before she was liberated by assistive technology and could only make about 30 sounds, Natalie Tumlin was a self-advocate, according to her mom, Beth Tumlin. "When she was about seven or eight, her school wanted to put her in a classroom with children with profound disabilities. It was a quiet, isolated situation, and she said, `No, no, no, no, no.' It was her first self-advocacy she let us know she didn't want to be isolated she wanted to be with others," Tumlin said.
Natalie Tumlin, 30, died October 1, but not before touching the lives of people all over the country, and lending her voice to help other Georgians with disabilities.
When Tumlin was 12, her world was changed by assistive technology (AT). "Her first Touch Talker opened the world up for Natalie, and Natalie up to the world," her mom said.
Because Natalie Tumlin had such a narrow repertoire of sounds she could make, people assumed she didn't understand what they were saying to her. But once she began using AT and started communicating with others, people realized she did understand.
While still in high school, Natalie Tumlin's selfadvocacy expanded to include advocating for others. She began attending meetings at the Cobb County Community Services Board about the lack of services for people with disabilities with her mother. "Natalie was at most of the meetings, adding in her two cents. That was important it wasn't just a group of parents, it was also a person with a disability describing what she wanted," Tumlin said. In 1997, the Tumlins became aware of the problem of waiting lists for services and a year later they started the Unlock the Waiting Lists! campaign. Natalie Tumlin became a spokesperson for that effort by visiting legislators and telling them what she needed. "All Natalie's legislators knew her," Tumlin said. "Natalie made the campaign real. She talked to people who lived in nursing homes and knew she didn't want to live in one." As a result of her advocacy efforts, Natalie Tumlin received a Community Habilitation and Support Services (CHSS) waiver that allowed her to live in her own home in 1999. She also received a supported employment grant. "She was able to get a job coach. She took the CCT (Cobb Community Transit) bus to the interview. She started working for Windy Hill Hospital as a courier and earned a paycheck. She had a lot of independence," her mother remembered. "She couldn't walk, talk, dress or feed herself, but she had two paying jobs and started her own company," Tumlin said. The waiver support allowed Natalie Tumlin to enjoy life in her community. "She loved doing what people took for granted. She loved going shopping, to the pharmacy and loved going to the dentist!" her mother exclaimed. After receiving her waiver, Natalie Tumlin's advocacy didn't end. She continued to give a voice to those who couldn't speak for themselves by participating in rallies, meeting with legislators and completing the Georgia Voices that Count class. "Communicating was Natalie's greatest achievement. It was something she couldn't do for such a long time. Being able to talk for others put the biggest grin on her face," Tumlin said. G
10 Making a Difference Winter 2006

AN ODE TO NATALIE
It is so hard to bid you farewell. You have touched so many lives and had so many stories to tell.
I think we first met at Wheeler High when you were a student there. A person centered plan we developed...what future might you dare?
You made it very clear what you had on your mind. It didn't take lots of words to know the life you wanted to find.
You used your Liberator to make sure that everyone knew. It really did give you freedom so your self-determination grew.
The ICWP came along after quite a wait. You moved into your own place and found a nice housemate.
Gina was the best at making sure your needs were met. She paid attention to the little details...on that you could always bet.
You found every opportunity to let the politicians know. That we needed more community services...so let the money flow.
Three governors of this state all knew you by name. Miller, Barnes and Perdue...on you they had no more fame.
I always loved how your mom would be introduced to others. It wasn't Beth... or Mrs. Tumlin...It was always Natalie's mother.
You were one of the most loved people I have ever seen. I know you never doubted it a moment...that must have felt serene.
The laughter, the joy, the good times that we all shared. Will make wonderful memories...no better ones will compare.
Too many of our self-advocate friends have left us this year. We will miss you along with Elaine, Teresa and Leonard's rally cheer.
I am sure without a doubt that heaven is a better place. Because you are there now with your amazing grace.
Thank you, Natalie, for being you and sharing your life with us all!!!
Dottie Adams, Family and Individual Support Director Governor's Council on Developmental Disabilities

Advocacy: The Impetus

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

Behind

Change GCDD Unveils 2006
Public Policy Agenda

Positive

T he Governor's Council on Developmental Disabilities
(GCDD) revised its agenda-
setting process for the 2006
session to engage a broader constituency
of organizations and individuals
involved with disability advocacy.
In September, letters were sent to 35 agencies and organizations representing a variety of disabilityrelated activities, inviting them to submit the budget or legislative issues on which they would be focused during the legislative session. The issue had to have some impact on the community of people with developmental disabilities; be in concert with GCDD mission, vision and values; capitalize on the expertise of GCDD; and be an issue for which GCDD could use its limited resources constructively. GCDD received input from nearly a dozen organizations, and also sought information from a few state agencies. These items were summarized and explained to council members at the October meeting, and through a point system, were separated into five tiers of action: initiate; active support; support by name; remain neutral; and oppose.
The following discussion presents the items on GCDD's legislative agenda to date. Keep in mind the activities of the legislative session are a moving target,
"Keep in mind the activities of
the legislative session are a
moving target, and GCDD's
attention to particular issues is
always subject to change."
and GCDD's attention to particular issues is subject to change. For that reason, an ad hoc Public Policy Committee was established of seven council members who will meet by phone to review the events of each week, make adjustments to the agenda and advise the deputy director. GCDD will be supported at the Capitol by several individuals who are working on particular budget items or legislation.

Tier I: Initiate GCDD Is Lead Agency
Amendments to the Election Code: This piece of legislation is carried over from last year. GCDD is awaiting a new draft from the vice chair of the House Governmental Affairs Committee. The legislation would make corrective changes to the following aspects of the code: definition of disability and attendant care; oath requirement; alternative means of voting; mental competence; requirements for accessible materials; assistance at the polls; and delivery of absentee ballots. The lead attorney at the Georgia Advocacy Office, Josh Norris, will be assisting GCDD with this piece of legislation.
Money Follows People Legislation: GCDD will assist People First of Georgia with this initiative. Several states and the federal government have some version Self-advocates march from the Capitol to the Freight Depot to call of Money Follows the attention to the waiting lists. Person legislation either in effect or pending. Georgia will be working on a draft that will authorize the transfer of funds that support individuals in institutional settings from the institution to their communities.
Tier II: Actively Support
GCDD will testify, help individuals testify, produce and disseminate information and talk with legislators about the legislation or budget issue.
HB 898: E-Text Legislation: Requires publishers to provide accessible education information (an electronic version) to postsecondary students with a print access disability. The e-version must have

www.gcdd.org 11

Stay abreast of the happenings at the session in several ways:
Find out who your legislators are. Go to www.vote-smart.org and enter your 9-digit zip code.
Check the status of current bills, resolutions and the committees your legislator serves on at www.legis.state.ga.us.

Make sure you are on the mailing list for Moving Forward, GCDD's weekly legislative update, that summarizes critical bills and the status of budget discussions. Moving Forward is also posted to the GCDD Web site at the end of each week.
Visit the GCDD Web site's Public Policy Link and download position papers and one-page fact sheets that you can share with legislators on the issues you are concerned about. A constantly

updated legislative agenda will also be posted there.
Attend Disability Day at the Capitol. This is a great way to invite your legislator to meet you for lunch at the Depot and hear your concerns.
Visit your legislator at the Capitol. There are always advocates on the third floor outside the double elevators who will be happy to help you meet your legislator at the ropes.

ADVOCACY OPPORTUNITIES

12

structural integrity. A coalition of the Statewide Independent Living Council (SILC), Association on Higher Education and Disability (AHEAD), Learning Disability Association of Georgia, Tools for Life and the National Federation of the Blind is supporting this legislation, which is assigned to the House Committee on Higher Education.
Medication Administration Certification Program: Department of Human Resources (DHR) has received support from Governor Sonny Perdue's office to proceed with legislation authorizing staff at Community Living Arrangements to administer certain medications and procedures to individuals with disabilities under the oversight, but not direct supervision, of a registered nurse. Staff must complete the Meds certification course, and the authorization will affect only homes in metro Atlanta at this point.
There are numerous budget items in the DHR budget that GCDD will actively support with the Unlock the Waiting Lists! coalition, under the leadership of Dave Blanchard, of the Atlanta Alliance for Developmental Disabilities. Most items are included in the Mental Health, Developmental Disabilities, Addictive Diseases portion of the DHR budget.
1,500 Mental Retardation Waiver Program (MRWP) waiver slots
Transition 135 consumers with developmental disabilities from Central State Hospital Allen Building
Transition 19 juveniles with dual diagnosis from NW Georgia Regional Hospital
Transition 38 consumers from the Freeman Building at Central State Hospital
Close West Central Georgia Regional Hospital in
Making a Difference Winter 2006

Columbus; serve consumers in appropriate settings
Close Craig Nursing Home at Central State Hospital; serve 149 consumers in appropriate settings
Support additional funding so providers can pay Direct Support Professionals fair and adequate wages, provide training and assure quality services (Service Providers Association for Developmental Disabilities SPADD)
Department of Community Health (DCH) budget: Medicaid Fund a basic prevention and minor restorative treatment dental care program for pregnant women and adults with developmental disabilities. (Georgia Dental Association, GDA)
Tier III: GCDD allows use of name in support,
but otherwise no activity. Organization supporting the item is listed. HB 369 and SB 159: Helmet Laws (with the Brain
and Spinal Cord Injury Trust Fund - BSCITF)
Grandchildren's Caregiver Subsidy Act (Georgia Council on Aging - GCOA)
Cause of Death Reporting Requirements (GCOA)
Common Sense Initiatives for Safer Health Care (GCOA)
Cruelty to Elder Person Act (GCOA)
HB 142: Create a duty to provide child support for children with disabilities beyond age of majority
SB 208: Modification of language for statute for Central Registry for BSCITF

PUBLIC POLICY

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

Budget Items
Funds to continue expansion of Aging and Disability Resource Centers (Division of AgingDOA)
DHR: Medicaid funding for 500 elderly consumers who are nursing home eligible: $1.475 million (DOA)
An additional $6,000,000 to provide services to individuals on the Community Care Service Provider waiver waiting list and $4,000,000 for 2,000 individuals who qualify for non-Medicaid Home and Community-Based Services (GCOA)
Additional funding to expand the Naturally Occurring Retirement Community (NORC) replicable model of home and community-based services to help seniors age in place (Jewish Federation of Greater AtlantaJFGA)
Increase funds to provide critical respite support for caregivers (JFGA)
Restore the Peachcare dental funding ($1.8 million) that was reduced in last year's budget (GDA)
Tier IV:
Council Remains Neutral
SB 78: Allow for exceptions of direct supervision of dentists to enable dental hygienists to provide prophylactic dental care to individuals with developmental disabilities in institutional settings
Implementation of Administrative Services: Organization to oversee functions of Medicaid (The Requests for Proposals for this function have not been developed yet, so it is unlikely this will be a legislative or budget issue this session)
Suicide Prevention: Proposed legislation for the Division of Public Health to create office of Suicide Education and Prevention

Tier V: Council Opposes
There are no budget cuts or legislation that GCDD needs to consider opposing action on at this time.
GCDD will track the development of several other issues, and should the deputy director feel GCDD needs to respond by stating its position or taking action, the ad hoc committee will meet to discuss the issue and advise the deputy director on the course of action. Items under watch include:
Paper ballot initiatives: Possible legislation to require all electronic voting machines to have a mechanism for recording a paper receipt that will enable the voter to verify their input (Concern is whether the paper receipt will have accessibility modifications for people with disabilities)
Use of Social Security numbers for voter registration
Medicaid Modernization: watch for authorizing legislation or a joint resolution allowing the governor's office to proceed with the proposed 1115 waiver.
Request of state funds in the Department of Community Affairs budget to provide accessibility modifications to homes where a person with a disability lives
Any legislation that would change the structure of the MHDDAD regional system
Additions to the DCH budget for Independent Care Waiver Program waiver slots. Currently the DCH budget contains no money for additional slots for the waivers, but advocates have begun speaking to the Office of Planning and Budget and various legislators about meeting this need. The request is for 152 slots, which would require about $3.2 million in state funds. If funds are included in the governor's budget request, the deputy director will request GCDD to consider active support.
This agenda does not include the bills and budget issues that arise once the session begins in January. The session begins Monday, January 9. GCDD expects the governor's budget address the following week, and after that, GCDD will know how things stand with advocacy efforts for the funds that support the Unlock the Waiting Lists! and institutional transitions. G

www.gcdd.org 13

Governor's Office

By Valerie Smith Buxton

Works to

Modernize Medicaid

W ith higher medical costs and rising enrollment, Georgia's Medicaid program is

predicted to consume more than 50

percent of all new state revenue by

fiscal year 2009.

The state is hoping to slow the growth in the

cost of Medicaid by proposing a 1115 waiver to the

Centers for Medicare and Medicaid Services (CMS)

that will allow the state to try new approaches to

health care delivery that are not included in

Medicaid's current regulations. In return, the state

will agree to stay within a specified budget.

"It's not clear what the impact of Medicaid

Modernization will have on people with disabilities

who rely on Medicaid for home and community-

based services," said Governor's Council on

Developmental Disabilities Executive Director Eric

Jacobson.

Most of the changes appear to only affect people

who rely on Medicaid for their health care, not those

receiving home and community-based services.

"The enhancements we're suggesting focus on

prevention, care and disease management,"

"It's not clear what the impact of Medicaid explained Abel
Ortiz, Governor
Modernization will have on people with Sonny Perdue's

disabilities who rely on Medicaid for home and community-based services."

policy adviser for health, human services, juvenile

justice and veteran's affairs. "We're proposing

incentives to encourage regular health care through

the medical home of the consumer's choice."

Ortiz hopes providing better preventive care

will help Georgia save money by reducing the more

costly trips to the emergency room or expensive

treatments for preventable conditions. Plus,

choosing a medical home can reduce costs by better

coordinating health care services for the consumer

and avoiding duplicated efforts.

Abel Ortiz, center, discusses disability issues with self-advocates.
The plan includes paying providers enhanced rates to provide better services, such as after hours and weekend hours or a nurse's call line.
Cutting wasteful practices will also help curb costs. "We won't bundle services that don't make sense. We don't need to pay for services people don't need," Ortiz said.
"We don't want to restrict eligibility or reduce the expansion of services. We want to keep people healthy," he said.
Another proposal is to subsidize the cost of employer-provided insurance for those who don't make enough money to pay for the insurance themselves.
Perhaps the biggest change being proposed is the establishment of health opportunity accounts (HOA) for consumers. "If someone is at risk for diabetes, and their primary physician advises them to go to a nutritionist, and they do that, money will be deposited in their account. They can use the money to pay for medical items or services they need that Medicaid won't pay for, such as dental care, transportation to the doctor, daycare while a parent is at the doctor and other health-related expenses," Ortiz explained.
Money for the accounts would come from savings generated through the other changes, and charitable contributions could pay into the accounts as well.
The plan, originally slated to be submitted to

14 Making a Difference Winter 2006

CMS January 31, 2006, may not be submitted as soon as intended, as stakeholders have proposed some changes the governor's office is considering. "We are re-looking at the date," Ortiz said.
Advocates Reaction Mixed
While the plan was developed with input from providers, consumer advocates and other stakeholders, some advocates have concerns about the plan.
"My fear is that the plan could be used as a tool to weed people off the rolls of Medicaid," revealed Rebecca Ramage Tuttle, CEO of disABILITY
" This plan will force us to negotiate
with the federal government each
year instead of receiving a
guaranteed match rate."
LINK, an independent living center in DeKalb County. She is concerned that people who don't follow their doctor's prevention advice could be dropped from Medicaid.
Ortiz said that wouldn't be the case. "If patients fail to follow their doctor's advice, there is no penalty, but the patient would not be able to get funding added to their health opportunity account," he explained.
In addition, Ramage Tuttle was disappointed that other items were not included in the proposal. "I would have liked to see more home and community-based services included," she said.
Jacobson agreed. "There's no data on how people with disabilities fit into the Medicaid Modernization process. Are the MRWP changes (Office of Developmental Disabilities Director) Steve Hall is proposing our part of the Medicaid reform effort?" (see sidebar on page 17).

Georgia Legislator
Recommends Federal
Medicaid Reform
Georgia Rep. Nathan Deal (R) presented Medicaid reform recommendations to the U.S. House of Representatives that were passed in H.R. 4241 (Deficit Reduction Act) November 18. As of press time, the House and Senate were negotiating a final bill to reform Medicaid, but the House had passed its final budget version December 19.
Changes to the Medicaid program included in the House's version of the budget included the Family Opportunity Act. The act, originally proposed in the Senate, allows low and middle-income families to access Medicaid for their children with disabilities. Medicaid is often the only program that provides the benefits needed by children with significant disabilities.
Some of the House's other recommendations included:
STOPPING OVERPAYMENT FOR MEDICINE Change
Medicaid payment rates for medicines so they are based on the average of actual sales prices for prescription drugs to avoid overpayment.
CRACKING DOWN ON ASSET TRANSFERS Restrict
the ability of elder law attorneys to qualify wealthy clients for Medicaid by transferring assets by beginning a penalty period on the date the individual seeks eligibility for Medicaid rather than at the time they transfer the asset.
SHARING COSTS Increase the co-pays for health services
from $3 to $5 for some Medicaid recipients.
PROVIDING FLEXIBILITY Allow states to modify
Medicaid benefits so that they are equivalent to other health programs in the state with the largest enrollment.
The spring edition of Making a Difference magazine will provide more information on what Medicaid reform Congress passes once the House and Senate reach a consensus. G
www.gcdd.org 15

Medicaid Modernization
Changes That Require
1115 Waiver
Governor Sonny Perdue's office is recommending a number of changes to modernize Georgia's Medicaid system. According to Abel Ortiz, the governor's policy adviser for health, human services, juvenile justice and veteran's affairs, implementing the following changes would require the state to apply for 1115, statewide waiver from the federal government:
Exploring options for employer-sponsored insurance
during eligibility phase.
Allowing consumer to identify health care home, which may
include physicians, pharmacy, mental health providers and/or dentists.
Providing prevention or educational services for consumers who
are at risk for chronic or persistent conditions and communicable diseases.
Including prevention and education under existing disease
management services.
Educating providers about community services and resource
opportunities and coordination.
Giving medical home providers the ability to make a referral
to a care management program that could include non-physicians who would be compensated for their services, such as peer supporters.
Health Opportunity Accounts:
I Zero beginning balance; funding is added when consumers make responsible health care decisions.
I Funding added based upon an individual amount, or capped amount for families.
I Funds may be used as payment for health-related services not otherwise covered under Medicaid (i.e. adult routine dental care, chiropractic care, orthodontists, transportation to doctor's appointments, etc.).
I Payments to providers for services funded from the savings account need to be made by the Medicaid payment system.
Providers Received Enhanced Rates For:
I Developing/participating in education, prevention and disease management.
I Participating in price transparency and quality outcomes measures.
I Taking part in peer to peer evaluation of practice patterns.
I Adopting the use of technology in their practice.
I Establishing a medical home. G
16 Making a Difference Winter 2006

One part of the plan Ramage Tuttle liked was the health opportunity account idea. "The health opportunity accounts would be a great help to pay for dental needs, assistive technology and other durable medical equipment that Medicaid doesn't pay for," she said.
An objection shared by Ramage Tuttle and consumer health advocate Linda Lowe is that applying for a 1115 waiver has the potential to limit federal funds.
"There is a danger in accepting limits on Georgia's access to federal funds. This plan will force us to negotiate with the federal government
"We need to be clear that there is
a misunderstanding that there is
a cap on federal funds. The plan
will have no negative impact on
federal funds."
each year instead of receiving a guaranteed match rate," Lowe said.
Ramage Tuttle agreed, "The state needs to take every opportunity to increase federal funds, not take the chance of decreasing them."
Currently, for each 39 cents Georgia pays for Medicaid, the federal government pays 61 cents. "Under the waiver, the federal government requires what we do to be budget neutral. We'll agree on a formula, trend it forward based on what we've been spending. They don't want to pay more than what they might have expected to pay without the waiver," Lowe said. "If the state goes over budget, we have to renegotiate with the federal government, and we may or may not get the extra money."
Ortiz insists the plan will not have a negative impact on federal funds. "If the plan doesn't remain
cost neutral over the total time of the waiver, we could lose the benefit of the enhanced waiver services, but federal funding is not at risk," he said. The governor's office has released a list of the changes they are proposing that would require the 1115 waiver, but Lowe feels many

MEDICAID
MODERNIZATION
of those changes could be done without a waiver, or with a more limited waiver that wouldn't limit access to federal dollars.
"There was a lot of discussion initially about long-term care. The disability community was already working on revising its 1915c waiver on the same topic," Lowe pointed out.
In addition, Lowe said that the state is already contracting with two companies who are supposed to develop wellness plans for people with disabilities without a waiver, one of the areas the plan says would require a 1115 waiver.
Jacobson felt the state should evaluate programs currently in place or already proposed before jeopardizing funding. "Managed care is supposed to start in April, and the state has already begun disease management for people with disabilities. The state hasn't given these programs enough time to evaluate whether they are achieving the efficiencies they expect. Plus both programs are supposed to create the savings they're proposing in the 1115 waiver," he said.
"The state is thinking about it backwards they are starting with `we want a waiver, ' not `where do we want to be with our program, and what authority do we have now to do those things,'" Lowe said.
The plan also proposes that some participants share in the cost of their health care. "When states increase cost sharing, people get worse care. They won't buy their high blood pressure medicine if they have to choose between that and food," Lowe said.
Lowe believes the only part of the proposed Medicaid Modernization Plan that would require the statewide 1115 waiver are the health opportunity accounts. "I understand the rationale for giving people rewards. But is it worth giving up access to federal dollars?" she asked. "I think the dangers outweigh the benefits."
Ortiz maintains a number of the proposed changes would require the 1115 waiver, but appreciates advocates' input. "Strong advocacy is good. Without advocacy, we wouldn't be where we are now. But we need to be clear that there is a misunderstanding that there is a cap on federal funds. The plan will have no negative impact on federal funds," he concluded. G

DHR Updates

MRWP

A fter 15 years, Georgia's Mental Retardation Waiver Program (MRWP) is getting a much

needed tune-up, according to

Dr. Stephen Hall, director of the

Department of Human Resources

(DHR) Division of Mental Health,

Developmental Disabilities, Addictive Diseases' (MHDDAD) Office of

Developmental Disabilities.

"Georgia's waivers for people with developmental disabilities are

some of the oldest in the nation," Hall said. "They are 15 years old,

based on 18-year-old technology. It's time for them to be changed."

The Office of Developmental Disabilities is working on changes to

the waiver that they will propose to go into effect July 1, 2006, if

approved.

The most fundamental change is that the waiver will include the

Money Follows the Person (MFP) philosophy, instead of giving funds

directly to providers who then decide which services people will

receive.

"When money follows the people, funding is fair, equitable and

makes sense, and is based on their exact needs," Hall said.

The MFP approach puts dollars where they are needed. For

example, under the current structure, people might be receiving

"Our responsibility is to ensure

funding for transportation

those with the greatest needs

services they

receive a greater amount of help."

don't need. "If a waiver recipient

has a friend who will drive him to his services, the state won't have

to pay for that," Hall said.

Under the proposed new waiver, each waiver recipient will

undergo a universal assessment that incorporates the Supports

Intensity Scale, that will let the state know the exact needs of

each person.

"Our responsibility is to ensure those with the greatest needs

receive a greater amount of help," Hall said.

If approved, Hall's office will phase the waivers in throughout

2006, based on the birth date of the recipient.

Hall said the new proposal will give people a lot more freedom to

choose services. "If you want to get a job welding, the waiver will

allow you to hire a welder to teach you," he said.

"The new waivers will allow recipients to work as much as they

want, go to clubs or class. They support you to get to church, and

they work in the evenings and weekends, too," Hall said.

He doesn't expect everyone to jump on the bandwagon

immediately. "Ninety percent of the recipients will choose the exact

same program they had this year. The following year, the 10 percent

of people who chose new services will talk about them, and about

six years out, we expect more than half of the recipients to be

choosing different services," he said.

Hall expects superior outcomes for people with developmental

disabilities as a result of this proposed waiver. "When you give

choices, recipients will make the right decision for themselves,"

he said. G

www.gcdd.org 17

By Christina Rosell
Leaving Central State
Hundreds May Seek
Community Living

Leonard Roscoe, Renee Peek, and their four-yearold son Nigel pose for their last family photo in January of 2005.

L ife could get exceptionally more fulfilling for 322
Georgians with develop-
mental disabilities, mental
illnesses and severe medical
situations at Central State Hospital.
But their quality of life is dependent
upon the Georgia General Assembly's
approval of the Department of
Human Resources (DHR) Fiscal Year
2007 Budget Proposal.
DHR has proposed that the state of Georgia: 1) Transition 135 individuals with developmental disabilities to the community; 2) Transition 38 adult extended-care individuals to community placements; and, 3) Close the Craig Nursing Home at Central State Hospital and serve the 149 individuals in appropriate community settings. "When they came into the hospital, we weren't able to offer the kind of support we can now," said Gwen Skinner, director of the DHR Division of Mental Health, Developmental Disabilities and Addictive Diseases (MHDDAD). "It's time to look at our institutions very carefully." If approved, the proposal to transition individuals into a more integrated community setting would help fulfill Georgia's commitment to implement the Olmstead Decision as mandated by the Supreme Court.

Quality of Life
HEALTH "People are much healthier when they're
out in the community," said Renee Peek, remembering her deceased husband's life in and out of Brook Run, a state-operated institution. With osteogenesis imperfecta, or brittle bone disease, Leonard Roscoe lived constantly with broken bones during his 23-year tenure in the institution. However, once he was in the community, he enjoyed five consecutive years without a broken bone.
His story was the same with pneumonia. After he left the institution, it was four years before he experienced a respiratory infection, something he suffered several times a year at the hospital.
"He would have died a long time ago if he had not gotten out," Peek speculated.
Tracy Peterson also experienced better health once she moved out of Brook Run, a year before it closed in 1997. "When one person gets sick, they all get sick," explained her mother, Valerie Schwartz. "By the time it makes the rounds, they start getting sick all over again."
CONTENTMENT Schwartz compared institu-
tional living to dorm living. "I think that first of all, even when people go off to college and live in the dorm most people don't want to be there the second year," she analyzed. "They would rather be in their own place." She pointed out many freedoms that most people enjoy daily are taken for granted: a private bedroom, personal belongings, a choice of what to do every day and what to eat for lunch. "None of these exist in the institution," Schwartz said. "Your personal things are not your personal things at the institution."
Peterson shares her home with a friend she met at Brook Run. Although Peterson is blind and has severe mental retardation, she enjoys "watching" musicals with her roommate and listening to music. The two also participate in music therapy twice a week together.
They take pleasure in simple things like having

18 Making a Difference Winter 2006

"Your personal things are not your personal things
at the institution."

Now that Tracy Peterson owns her own home, she enjoys sitting outside during frequent visits with her mom, Valerie Schwartz.
lunch on their deck outside, smelling the sweet aromas from the preparation of their favorite meals, having their own clothing that doesn't get stolen and sitting in soft furniture all luxuries that didn't exist when they lived in the institution. "I don't care how good an institution is, it's still bad," Schwartz concluded.
When Roscoe moved into the community at 25, he was finally able to lead his life the way he wanted to. He became a DJ and enjoyed circulating the clubs in Atlanta with his wife. According to Peek, they were approached at a show by Mary J. Blige, and the famous singer asked her if she was Roscoe's wife. "Mary was one of the few people who said to us, `Is that his wife?'" Mostly, people assumed that Roscoe's quality of life didn't include a wife or family.
Five years ago, Roscoe and Peek adopted a son, Nigel. "He was the best father!" she said proudly. "We celebrated 10 years out [of the institution] in January and four years with Nigel in February." A month later, Roscoe died. "I'm so glad he had those four years," Peek said.
Skinner feels people are happier outside of the institution because of interactions with other people. "They have few, if any, relationships with people who are not paid to have relationships with them [in the institution]," she said. "It's unnatural that everyone who spends time with you is paid to spend time with you. Having relationships enriches our lives, and it will do the same for these individuals."

FEAR NOT When Brook Run was in the

process of shutting down, many family members of

the individuals living there were scared and

concerned. They felt the individuals might not get

support in the community or even that they liked

living in the institution since they had been there

for so long.

"People fear what they don't know," said Janet

Deal, regional director of ResCare of Georgia, a

service provider for people with disabilities and

former employee of Brook Run.

"I moved to the community program when it

closed, and I've seen individuals that I knew for

years live in the community now and do well."

Like many parents at Brook Run, Schwartz was

not in favor of the institution closing at first.

Although she didn't feel completely comfortable

putting her daughter in the institution, she felt like

she was safe there and her basic needs for food and

shelter were met. "People who cling to an

institution cling because that's all they've been

exposed to," she remembered.

As she became more involved in advocacy

however, she changed her mind about where her

daughter would live a better life. Ron Cornelison of

Options for Supported Living educated Schwartz on

her choices, convincing her that the brick and

mortar of an institution did not provide care as well

as a community could. "I finally felt like it was the

best thing for Tracy and

everybody else," she " People who cling to an

remembered. "I took the big step to let her come

institution cling because that's

on out."

all they've been exposed to."

Sometime after

leaving the institution, Schwartz' daughter

experienced some general health problems that

required medical attention. "I think that's every

parent's fear `If my child gets sick in the

community, no one will take care of them'," she

explained. "This is a fear parents have, but it's not

founded. Tracy's gotten really good care, and the

doctors are willing to prescribe or treat her and be

very patient."

www.gcdd.org 19

FEATURE

Now that Peterson lives just 10 minutes away, her mom has more peace of mind. "I manage to see her more often. On the way to the grocery store I can drop by and give her a kiss and be on my way," Schwartz said.
She also appreciates an improved quality of care by service providers. "I know when I call her home, I'm going to speak to the person that's there everyday and that person knows what I need to know," she said. "When you call an institution, it could be luck of the draw who you speak with."
BEHAVIOR Some people worry about residents
with behavior problems leaving the institution. Skinner says that it's DHR's job to work with them to transition to support and therapy.
As a mother of a daughter who was in an institution for 21 years, Schwartz talked of her own observances on behavior in and out of institutions. "Sometimes the behaviors are caused by the environment. If you had to be in a room with 28 other people who are yelling and banging and screaming, and you need attention, the only attention you are going to get is negative attention," she said. "People who move into a smaller, more structured environment are going to improve their behavior."
She referred to a study where a behavioral psychologist tried to work with patients in an institution. It failed because it was inconsistent. The day shift was made up of trained professionals who knew what the patients were trying to learn and how to interact with them properly. However, the night shift staff wouldn't follow through with
"People who move into a smaller, more structured
environment are going to improve their behavior."
the program because for them, there was no incentive.
"The payoff is greater in the community than in the institution," Schwartz pointed out. An individual's behavior is more likely to change for the better when a care giver is in a living situation where his or her quality of life depends on the individual's positive behavior.
According to Deal, behavior therapies are available to individuals who need them when they are living in a community. "There was a fear at the closing of Brook Run for medical needs or behavioral needs...with good planning, all of those needs can be met," she said.

THE TRANSITION Skinner is aware that

people with family members in Central State

Hospital have concerns about the pending

transition. "I understand worrying," she said,

referring to her children when they left for college.

"Are they going to make the transition? Is someone

going to be attentive to their needs? Is anyone

going to care about them as much as us?" But, she

insisted that if the proposal passes, people would

receive sufficient support based on their needs.

"What our work is, if

this is approved, is to

do a very individualized

assessment of each

individual and figure out

what they need

individually."

Deal said, "When

folks come together and

look at the individual

and plan based on the

individual, things go

well." But she added

that the transition would not be a fast or

Gwen Skinner, director of the DHR Division of Mental Health,

easy process, and it takes Developmental Disabilities, and support and hard work. Addictive Diseases (MHDDAD)

Importantly, communication between the hospital

and provider network is key.

Peek worked to get her high school sweetheart,

Roscoe, out of Central State Hospital when he was

25. "It's important to have a good circle of

support," she recognized. Now she's raising her son

who has several mental and physical disabilities.

"I'm raising a child on my own who is bipolar and

has severe ADHD...it can be done with the proper

supports," she concluded. "I will die before my child

goes into an institution."

If the proposal passes, DHR intends to start

analyzing living situations in the community for

Central State individuals immediately. DHR plans to

work with the individuals, their families and the

staff at Central State to determine needs for

support. Individualized supports could include job

training and placement, help with cooking or

assistance performing the activities of daily living,

such as dressing or bathing.

Then, appropriate living situations and

locations would be examined. In cases where

individuals' families are involved in their lives,

appropriate support systems would be searched for

or created in or near the communities of the family

20 Making a Difference Winter 2006

LEAVING CENTRAL STATE

members. "We're not going to move people until there is a good plan," Skinner said. "We have to consider each person individually because we are talking about quality of life."
Deal and Skinner both recommended that people who are concerned about their family members moving to the community should contact local advocacy organizations to meet others who have made a successful transition.
The Georgia Peer Support Project by MHDDAD, with support from the Governor's Council on Developmental Disabilities and disABILITY LINK, gives people access to peers who share their own experiences. Some peer supporters offer the story of their moves from institutions to various community settings. This support is offered through Centers for Independent Living throughout the state. The centers can be found by visiting http://silcga.org/ CIL_List.htm or by calling the Statewide Independent Living Council at 888-288-9780.
THE WORKERS Critics of the DHR proposal
worry that there aren't sufficient community supports and are concerned that people at Central State Hospital will lose their jobs if the proposal is approved.
As regional director of ResCare, Deal is well acquainted with hiring care givers to serve individuals in the community. She agrees that there isn't a pool of provider staff just waiting for individuals to serve. However, she feels that workers will come forward as needed. "The provider network does have capacity to support people, and it grows as more people need services," she said.
The care givers at Central State Hospital are the most obvious people to hire as care givers for individuals moving out of the institution. "There will be opportunities for direct support staff and leadership opportunities as well as opportunities to be a host provider in their own homes," Deal said. "MHDDAD and local providers are always looking for new providers of support."
After 16 years as an employee at a state-run institution, Deal started searching for another job when she found out the hospital would close in the mid-90s. She visited several community programs and was soon working for the DeKalb Community Service Board.
"I found that the transition was a good one," she remembered. "I never will forget the first day I went out and visited individuals in their homes, and

met people I had worked with at the hospital 16 years earlier. They were living well in their own homes in the community. I found it was very satisfying, and it was a continuation of my career."
In her new role as a community provider, Deal observed the individuals' higher quality of life and related with their sense of pride. She spoke of a unit of 16 men at the hospital and how their quality of life has changed, "...now I see them living in the community with roommates and going to the movies. I regret saying things like, `they are too medically complex.'"
When the hospital closed a year later, Deal hired several of the staff members she had worked with as direct support staff for people with disabilities living in apartments and group homes. Support staff were also needed for day programs and employment support.
She concluded that many workers at Central State Hospital have been there for many years and enjoy supporting people with disabilities. She felt that although the hospital is closing, they can continue working with people with disabilities in the community.
According to Skinner, the workers should not expect decreases in pay when they transition to community support roles because the state pay rate is set. Deal noted that the pay varies from private organizations to state jobs but as is with most jobs, the more highly experienced workers garner higher pay rates.
Skinner said the hospital workers will have assistance in transitioning into community support roles because DHR plans to coordinate with the Office of Human Resource Management and Development and the Department of Labor. "We don't want to lose highly trained workers," she said. She also said the hospital care givers would not need further training to go out into the community. "It's more of a re-training as a mindset you don't need a hospital to help people get dressed." G

Advocates celebrate the right to live in the community by marching in front of Central State Hospital during the 2004 Long Road Home March.

www.gcdd.org 21

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

Bernard Baker is the president of People First of Georgia, and was one of the founders of the state and national People First, as well as the Atlanta ADAPT. He is a volunteer for Georgia Voices that Count and a member of the MARTA END Advisory Board for Paratransit and the Handicapped Access Advisory Committee. Baker, who has cerebral palsy, lives in Atlanta and has three children.

Advocacy means being able to get what you want done done by any means necessary. Sometimes that means taking over a public official's office by blocking the doors, blocking elevators or any other means necessary. Sometimes it may even mean getting arrested for a cause that you believe in.
There are also other means of getting your point across. You might hold a meeting, write letters, make phone calls or have discussions on certain issues you believe in. It may mean going to several different groups and organizations to sit down in a roundtable discussion about the issue you want to work on. But it means never giving up on your dreams, your goals or what you believe in. Before I joined any groups, I was fighting my own personal issues as my own self-advocate. Selfadvocating by myself was harder.
One thing my mom and I advocated for was accessible transportation so I could go to the doctor on the bus. Mom had to carry me on her hips on the bus, so we advocated for accessible transportation. We also advocated that I be put into a regular school classroom with kids without disabilities. That didn't happen for a long time.
When I want to elementary school, I was put in a special class for kids with disabilities. I never went to a typical class until high school, when my homeroom teacher was determined I should attend regular classes. He carried me up the stairs so I could get to class. Without him, I wouldn't have been able to take normal classes and be included at Walter F. George High School.
Advocacy also means finding a group of people who believe in the same issue because they have similar problems. The main goals are to get what you want changed and get your issue heard. It's still hard to create change, but I have more support in groups than I had alone, and there's more power in numbers.
I am now president of People First of Georgia. ADAPT and People First are teaming with other groups to work to convince legislators to pass Money Follows the Person legislation, so people can

live in the community instead of institutions and nursing homes. We are also part of the Children's Freedom Initiative so we can make sure children no longer have to go to institutions and nursing homes. I will not rest until I see people getting what they want, when they want and how they want it. I believe in self-determination.
Since I've been advocating as part of a group, I've helped convince Greyhound to put lifts on its buses, MARTA to purchase more buses with lifts and airlines to be more sensitive to the needs of passengers with disabilities.
There's still a lot of work to be done. I'd like to see more accessible transportation for people with disabilities. We have MARTA in Atlanta, but I'd like to see more private companies be more accessible to people with disabilities and not be so expensive. I want to start my own transportation company and have it operated by people with disabilities. I'd like to convince tour buses to add lifts so people with disabilities can take tours. I'd also like more affordable and accessible housing with no-step entrances for people with disabilities.
Up until now, my biggest advocacy successes have been working on a committee for MARTA to help them change what they need to change and advocating with ADAPT to help get lifts on Greyhound buses.
"It's still hard to create change,
but I have more support in
groups than I had alone, and
there's more power in numbers."
That's what self-advocacy means to me, and I've been a self-advocate all my life. If I had to give advice to new self-advocates, I'd say the best thing is to listen to older advocates, learn from them and work together as a team. G

22 Making a Difference Winter 2006

A New and Veteran Advocate Share Their Thoughts on Advocacy

Diana Schwartz

Advocacy: One Girl's Voice
By Jordan Schwartz, Self-Advocate

At seven, my first try at theater was as a seagull. Fun, but hard work too, and with theater, my mother's only rule was commitment. She said that if I got a part, then people were counting on me, and I had to do my best and could not quit midway. At the end I could choose to never do it again, but about 157 performances later, I guess that I decided to stick to it. It's fun working with different casts and friends, and now I see that an early lesson in commitment was my first lesson in what advocacy means to me.
"Encouragement matters because
individual effort, as small as it
sometimes seems, can make a
difference and will leave a legacy."
I've learned a lot through theater, and I got to thinking about the "Whos" in Dr. Seuss's Whoville, after seeing Seussical performed by my classmates at Atlanta Girls' School. When one Who wanted to be heard, only Horton heard. No one else would help until all the Whos in Whoville committed to join together to be heard, then Whoville was saved. This play gave me an idea, and as a legislative page, I knew that there is a process to get the word out, to get information, to get answers and to be heard. My theater background gave me the confidence to go public with my message and reach out with my Web site, ugrowgirl.org as a way to be heard.
Advocacy is of value to many aspects of a person's life, whether your reason to advocate is for a cause or for yourself, or as in my case, for both. Last year, at age 11, I found out that I had Turner's syndrome, and after my health insurance denied medically necessary medication, I worked with my family to see if the Katie Beckett (Deeming) Waiver could help, but I was denied there, too. It was scary knowing that I only had a few years when the therapy could make a difference. I was running out of time, and it felt like no one was listening.
The Governor's Council on Developmental Disabilities was there to listen, and Sen. Judson Hill

(R-Marietta) has asked me to page for him this session so I can listen, learn, improve my advocacy skills and be heard. Through ugrowgirl.org, I can build bridges between support systems while providing encouragement and a venue for expression.
Encouragement matters because individual effort, as small as it sometimes seems, can make a difference and will leave a legacy. I know that my advocacy and commitment can link together to form a strong bond so that I can work toward communicating an effective message of encouragement, compassion and tolerance, and this poem expresses my ideas on reaching my goal.
u grow girl
by Jordan Schwartz
u grow when you serve
u grow when you teach
u grow when you learn
u grow when you reach out to
others and share who you are.
Live your life extending your
arms in friendship and service.
Learn that when you give of yourself, U GROW GIRL!
To learn more visit: ugrowgirl.org and www.childrensbilingualtheater.org. G

Jordan Schwartz is a 12-year-old girl who has Turner's syndrome, a rare genetic disorder in which women are missing part or all of their second X chromosome. She is a passionate advocate on behalf of herself and others with the syndrome.

www.gcdd.org 23

Executives Discover
By Christina Rosell People with Disabilities
Can and Want to Work

C orporate America was recently cautioned of the effects of neglecting the disability market. "In the

next few years in this country, you'll

see a war for talent and a labor

shortage, and yet the disability market

is untapped," Emily Myers-Briggs of

Briggs & Associates predicted.

Top executives from large corporations in

Atlanta as well as owners of small and mid-sized

businesses were invited to the 2005 Discovery Tour

October 25, sponsored by the Governor's Council on

Developmental Disabilities (GCDD).

The fifth annual Discovery Tour began at the

Martin Luther King, Jr. National Historic Site, and

coincidentally, the day after civil rights activist Rosa

Parks died.

Discovery Tour co-host Gloria Johnson-Goins,

vice president of diversity at The Home Depot

Corporation,

"In the next few years in this country, you'll said Parks

see a war for talent and a labor shortage,

should be remembered

and yet the disability market is untapped." as "a symbol

that everyone

still needs opportunities to ride the bus."

She went on to say that corporations should

see people with disabilities as people who can be

productive employees. "We want a Georgia that

employs all its citizens who want to work."

Disability
Employment Today
Kate Gainer, disABILITY LINK advocacy coordinator, demanded businesses give people with disabilities a chance to work and be productive. "Ten years ago, we were told we would be saviors of

24 Making a Difference Winter 2006

the workforce, and yet today, the unemployment rate for people with disabilities is 70% way below the national average!" she said. "It's time the private sector kept its promise. I challenge you to provide us with the opportunities to become full, productive Americans."
Discovery Tour Co-Host Dave Altman, vice president of corporate communication at the Southern Company, said his company was actively recruiting people with disabilities.
"There are ways to recruit and employ people with disabilities, but recruiting managers don't know how. We've got to raise awareness with people in business," he said.
Later, tour participants went to Emory Crawford Long Hospital and were introduced to a young woman whose main responsibility is to care for IV pumps and a man who stocks carts for anesthesiologists. Another young woman with a disability enjoys working with people. "I escort patients to the pre-surgery area and recovery area," said Adetola Shobaloju. Although it is hard for her to remember routes because of her disability, she is able to navigate the hallways with a system of strategically placed American flags that point her in the right direction.
These workers were hired in the last year, after Diane Prindle, regional director of Briggs & Associates, a specialty employment agency, approached Chief Operating Officer Albert Blackwelder. She requested that Blackwelder fill one of the hospital's business needs a need for dependable employees by hiring people with disabilities. The request was based on a successful hiring program called "Project SEARCH" at Cincinnati Children's Hospital Medical Center. Prindle told Blackwelder, "We affect the bottom line." She was pleased that he immediately grasped the idea and "took action."
After nearly a year of employing people with disabilities, Blackwelder examined the program's success. His original goals at the beginning of the program were met: 1) full time equivalents were not increased (a benchmark to measure against other

hospitals) and 2) costs had not increased. "One

thing I didn't ask for, we've gotten: an increase in

quality," he noted. "What [Briggs & Associates] was

doing was no
different than "Unfortunately, we

what we've

were excluding a

been doing when we

whole group of people

have an empty because they didn't

job, we look for the right

fit the description."

person to fill it. Unfortunately, we were excluding

a whole group of people because they didn't fit the

description," Blackwelder said.

Ultimately, he found that hiring individuals who

love their jobs, enjoy the people they work with and

feel respected in their departments as contributors

actualized a measurable decrease in costs. "Our

pump costs are a lot less than Emory University's

because the IV pumps here are cared for

meticulously," he said.

Blackwelder also found other employees were

more satisfied. He noticed an increased appreciation

for the new positions among the anesthesiologists.

"Anesthesiologists have a toolbox they are a tough

thing to maintain and it's a problem when one goes

to pull out a tool, and it's not there," he explained.

"We don't have that problem anymore." Blackwelder

said Maurice Goodwine, who has a disability,

meticulously ensures the carts are adequately and

neatly stocked, allowing the anesthesiologists to

better perform their jobs.

Supported Employment
Amidst a shortage of nurses and operating room (OR) technicians, Prindle suggested removing nonmedical tasks from their daily responsibilities such as stocking carts or cleaning equipment. By removing these tasks and assigning them to other workers, the hospital could function more efficiently with less nurses and OR techs.
"I agreed to do this, but put some responsibility back on Diane." Blackwelder said. "I can't

increase my costs this is a low margin business." Briggs & Associates worked with the hospital
staff to determine what roles needed to be filled. Then, they coordinated a work-study program with DeKalb County schools. The first class of eight students spent time in the hospital classroom and upon graduation, each student was hired to fill a position that fit his or her abilities.
The hospital provided a classroom, but Briggs & Associates handled all necessary training. "We didn't have to pay for that!" Blackwelder said.
Because of the program's success, Emory University Hospital currently has a class in session and plans to hire the graduates sometime this year.
Assistive Technology
The next stop on the Discovery Tour showed how assistive technology (AT) can make working possible for people with disabilities. Many companies see AT as a financial barrier to hiring employees with disabilities. However, in many cases, AT can be as simple as a piece of plywood to prop up a piece of equipment.
"Assistive technology plays a vital role in helping people with disabilities, their families and their employers," Altman said.
Anil Lewis, president of the Client Assistance Program, demonstrated some of his AT. Lewis, who lost his eyesight in his mid-20s, earned an M.B.A. at Georgia State University and is currently working on a law degree with the help of handheld electronic devices with Braille and WebCT. Many institutes of higher learning now utilize WebCT, an internet-based system that allows professors to post notes and handouts online before class. This permits students with visual disabilities to read along with the rest of the students during class, something they were unable to do in the past.

The art of Lois Curtis is presented to Gloria JohnsonGoins of The Home Depot and Dave Altman of Southern Company by GCDD for their leadership in hiring people with disabilities and for co-hosting the Discovery Tour.

www.gcdd.org 25

DISCOVERY TOUR `05

When Anil Lewis lost his eyesight, he thought he would never succeed in the business world. Now he attends law school with the help of assistive technology.
Now he happily calls himself a "gadget man." Although some AT can be as simple and as
inexpensive as jar opener grips, others can be more costly. ReBoot Assistive Technology Resource Center (ATRC) in Tucker, Ga., offers a "try before you buy" option so people don't make costly investments in the wrong technology.
Eric Krugg demonstrated his equipment for tour participants. He tested a device that helped him speak, a challenge since his brain was injured in an accident. His device was on loan for a month. "My primary goal is to get a job to have enough cash to have my own house," he said with the help of the device. However, he wasn't sure the equipment was worth the investment and thought he might try out other equipment before purchasing it.

Crystal Beelner had many interviews before an
employer saw beyond her disability and hired her.

Attitude
Discovery Tour participants learned about stereotypes and attitudes and how they affect people with disabilities in the workplace. Before becoming an attorney for the Georgia Advocacy Office, Crystal Beelner lost count of how many times she was interviewed. With her resume, she was able
to land an initial interview, but once people saw her, a woman with dwarfism, she wasn't called back for a second interview. "I've had everyone, including judges, make rude remarks," she said. "That's why it's so important to cross attitudinal barriers."
She realized she had to make others comfortable about her disability before they could see her for who she was a qualified attorney. "Coworkers have to be comfortable," she said. "They're scared thinking, `I might offend them.' Chances are, you will. That's just part of life." But, she learned that being
upfront with people about her disability on the phone helped increase their comfort level and her chances of getting a second interview.
Lewis discussed a different kind of attitude change. When he lost his eyesight, he thought he had lost his way of identifying himself. As a student, Lewis could read an unbelievable 750 words per minute. "I can't do that with
Braille or my fingers would explode!" he laughed, only half joking. "I had to conquer my attitude ... I learned the only thing that changed was I couldn't see." He soon realized he could still accomplish his goals, he would just need a little AT and a better attitude to do so.

Visitable Homes
Unfortunately, many Georgians in wheelchairs miss out on social activities because their family and friends have steps at the front, back and garage doors, skinny doorways and tiny bathrooms.
The last stop on the 2005 Discovery Tour was a "visitable" town home community in Decatur. East Lake Commons has simple features that allow people in wheelchairs to be able to visit, including no-step entrances (not necessarily the front door), wider doorways and bathrooms with room for wheelchairs.
Eleanor Smith, a community resident and founder of Concrete Change, a nonprofit organization dedicated to making homes visitable, said renovating a home to be visitable can cost thousands but building one from scratch might cost just a few extra dollars for a wider doorframe and door.
Employment Support
Among adults with disabilities ages 18-64, three out of 10 (29%) work full or part-time, compared with eight out of 10 (79%) of those without disabilities a staggering gap. Compare this to the number of people (16+) with disabilities who are unemployed, 72% of which would prefer to work according to a 1998 Survey of Americans with Disabilities by the National Organization on Disability and Louis Harris & Associates.
"We can't have help getting people into jobs without the support of the corporate community," said Tom Seegmueller, GCDD chairperson. At least one tour participant connected with the disability community's message by the end of the tour. "I'm seeing possible opportunities for small businesses," said Pamela Goldstein Sanchez of Pam Sanchez Designs, Inc. in Atlanta. She concluded that someone with a disability might be able to help her organize her resource library or help clean her husband's tools at his orthodontic practice.
"There are hundreds of individuals with disabilities who want to work," said Beelner. "They have the ability to adapt to your organization." G

26 Making a Difference Winter 2006

CALENDAR OF EVENTS

JANUARY
January 27 Autism Workshop A Conference for Parents & Professionals Woodstock, GA 770-591-9552 www.behaviorconsultant.com/ablls.htm
January 27-29 Division E Midwinter Conference "The Illusion of Therapy: Discover the Magic Within" Emerald Pointe, Lake Lanier Islands, GA
FEBRUARY
February 1 Healthy Mothers, Healthy Babies Coalition of Georgia's 19th Annual Legislative Breakfast "Sloppy" Floyd Veterans Building Atlanta, GA 770-451-0020 www.hmhbga.org
February 2 Wright's Law Special Education Law & Advocacy Seminar Gwinnett Convention Center Duluth, GA www.wrightslaw.com
February 3-4 Autism Society of America Greater Georgia Chapter Annual Autism - Asperger Conference Gwinnett Convention Center Duluth, GA conference@asaga.com

February 6 Mental Health Day Georgia State Capitol Atlanta, GA 404-656-8508
February 8-9 Poor People's Day Georgia State Capitol Atlanta, GA 404-622-7778 info@gahungercoalition.com
February 14 Money Follows the People Day Georgia State Capitol Atlanta, GA ngainer@msn.com
February 16 3rd Annual Under One Roof Housing Conference The Nuts & Bolts of Georgia's Housing Resources 478-825-6954 thomasb@fvsu.edu
February 23 Disability Day at the Capitol Atlanta, GA 404-657-2126 www.gcdd.org
MARCH
March 1-4 Better All Together Inclusion Works! Conference University of GA Continuing Ed. Center Athens, GA www.gcdd.org
March 3-5 The 2006 Josephine L. Taylor Leadership Institute

Renaissance Atlanta Hotel Atlanta, GA www.afb.org/jltliregistration.asp
March 18-23 ADAPT National Action against Institutions Hilton Hotel, Nashville, TN 512-442-0252 www.adapt.org
APRIL
April 17-18 2006 Multiple Perspectives on Access, Inclusion & Disability Ohio State University Columbus, Ohio

ADA-OSU@osu.edu www.ada.osu.edu/ conferences.htm
April 20 -22 Governor's Council on Developmental Disabilities Quarterly Council Meeting Public Forum - 7 PM Albany, GA 404-657-2126 www.gcdd.org
To include events through mid-July in the next edition, please send to val@oneillcommunications.com by March 6.

One size fits all didn't fit Johnny.

www.gcdd.org 27

LEGAL UPDATE

Alternatives to Guardianship
By Kathleen Harris

Kathleen Harris is a disability law
attorney from Michigan who served
on the Michigan Supreme Court Task Force on Guardian-
ship and also on legislative work groups to reform guardianship law.
Currently, she consults with states about alternatives to
guardianship through her work with the Center for Self-Determination. She also serves on numerous boards of nonprofit agencies that promote civil liberties and selfdetermination for
people with disabilities.

E ven though an individual may be found legally "incapacitated," it does not necessarily follow that the individual needs a guardian. There are many other ways to assist individuals to make decisions without resorting to this legal process which removes fundamental rights.
Person-Centered Planning (PCP)
The best way to avoid guardianship is to assure enough support for individuals from families, friends and others so the individual's preferences can be honored, respected and implemented. This is generally done through a process called personcentered planning (PCP).
Through PCP, individuals tell professionals and other interested people what they want and need. If the individual is unable to direct or participate in this process, the people closest to the individual confer about what they believe the individual wants and needs based on their knowledge and observations of the individual. They then assure implementation of the plan.
Family Consent
Hospitals and medical centers typically have family consent policies that address who can give consent for medical treatment if it is determined that an individual is not competent to give such consent. Usually, immediate family members are the ones who are authorized to give consent, followed by more distant relatives and close friends.
There are no legal reasons why other providers, such as mental health programs and school systems could not also implement family consent policies (and some do). As providers are beginning to address self-determination, choice, and are implementing person-centered planning, they are also implementing family consent policies.
Durable Powers of Attorney
Durable Powers of Attorney are executed through legal documents in which individuals give the power to authorize certain actions on their behalf to another individual if they become unable to make their own decisions. A variety of powers can be given in this way, but the most common are medical and financial.

Finances
When an individual is determined to be unable to handle money, a number of alternatives can be explored. For someone receiving government benefits, a representative payee may be appointed to receive and disperse the funds.
Durable Powers of Attorney for Finance can be effective if executed before the person becomes "incapacitated." These are documents in which individuals designate someone to handle their money in the event they become incapacitated. If such a document was not executed in time (before the person became incapacitated), electronic deposits and automatic bill paying might be desirable. Or, it may be possible to hire a personal money manager to receive funds and pay bills.
If no trust was devised, and no power of attorney was executed, it is possible to have someone appointed a conservator or guardian of the property by a court to handle the estate. The guardian of the property would be accountable to the court and would not affect as many personal rights as guardian of the person under Georgia law.
For those with developmental disabilities or mental illness, however, a "special needs" trust may be the best route to handle money. Such a trust can be established to enhance the individual's life while protecting eligibility for Supplemental Security Income (SSI) and Medicaid. These trusts are an excellent way for parents to plan and monitor their child's life after they are gone. Parents can designate money to pay for a person or agency to visit and report to the trustee about the well-being of the recipient. Families can specify that the report include such things as whether their child is happy in their home, whether they are getting out into the community or whether they are given enough opportunities to live as independently as possible. By establishing such a trust, parents provide supplemental income to their child above SSI and Medicaid, and also achieve peace of mind about what will happen to their loved one after they are gone.
In summary, our goal is to assist people with disabilities build caring relationships among family, friends and others. This support circle helps assure through these alternatives that people's preferences and wishes can be honored, respected and implemented without resorting to legal guardianship. G

28 Making a Difference Winter 2006

RESOURCES

pg. 11

pg. 14

pg. 18

pg. 24

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
Department of Community Health www.dch.state.ga.us/ 404-656-4507
Department of Human Resources www.dhr.georgia.gov 404-656-4937
Department of Labor www.dol.state.ga.us
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
Advocacy
disABILITY LINK www.disabilitylink.org 404-687-8890
Georgia Voices that Count http://www.disabilitylink.org/docs /voices/voices.html 404-687-8890, ext. 114
Atlanta Alliance on Developmental Disabilities Legislative Action Center http://www.ciclt.com/aadd/ 404-881-9777
Georgia Advocacy Office (GAO) www.thegao.org 404-885-1234 800-537-2329
People First www.disabilitylink.org/docs/ people.html 404-687-8890 404-687-9175 TTY 800-239-2507 (V/TTY)
U Grow girl www.ugrowgirl.org info@ugrowgirl.org
Unlock the Waiting Lists! www.unlockthewaitinglists.com 877-WAITLIST

Assistive Technology
ReBoot ATRC www.reboot-atrc.org 770-934-8432
Center for Assistive Technology & Environmental Access www.catea.org 404-894-4960
Georgia Tools for Life www.gatfl.org 800-497-8665 TDD: 866-373-7778 Atlanta Metro TDD: 404-486-6333
Civil Rights
The Martin Luther King, Jr. Historic Site www.thekingcenter.org 404-526-8900
Community Support
ResCare of Georgia's Options for Supported Living www.rescare.com 770-908-2481
Medicaid Reform
Georgia Budget & Policy Institute www.gbpi.org 404-420-1324
Georgia Coalition United for a Responsible Budget www.gacurb.org

MRWP Changes
Department of Community Health http://dch.georgia.gov/00/channel _title/0,2094,31446711_372805 43,00.html
Peer Support
Centers for Independent Living http://silcga.org 888-288-9780
Supported Employment
Briggs & Associates www.briggsassociates.org
CobbWorks! www.cobbworks.org 770-528-8072
pg. 18
Universal Design
Concrete Change www.concretechange.com
EasyLiving Home www.easylivinghome.org 404-723-5503
Universal Design Alliance www.universaldesign.org 770-667-4593

www.gcdd.org 29

SUPPORTING THE DISABILITY COMMUNITY
Thanks to OUR SPONSORS
for their
Support.
If you are interested in being
a sponsor for Making a Difference magazine, please call
Christina Rosell @ 770-578-9765
30 Making a Difference Winter 2006

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

SPONSORSHIPS
"Complete developmental occupational therapy for children
toddlers through teens." 770-394-9791 www.childrens-services.com

www.gcdd.org 31

The quarterly magazine of the Georgia Governor's Council on Developmental Disabilities
Volume 6, Issue 3 Winter 2006

For more details, or to register for Disability Day at the Capitol, see page 7.

Disability Day at the Capitol Your Vote Makes a Difference!
FEBRUARY 23, 2006
A ccessible voting is an important issue for people with disabilities. Join with hundreds of other self-advocates from across the state and let your legislator know how you feel on that issue and others that affect the lives of people with disabilities.

Governor's Council on Developmental Disabilities 2 Peachtree Street, NW, Suite 26-246 Atlanta, GA 30303-3142 404-657-2126, www.gcdd.org
Address Service Requested