In July, the Georgia Council on Developmental Disabilities (GCDD) unexpectedly said goodbye to an amazing, hard-working advocate for people with developmental disabilities.
Elizabeth Dawn Alford (known to her friends, family and colleagues as “Dawn”), GCDD’s Public Policy Director, left a legacy on disability rights and established strong long-lasting relationships with legislators and people across the state.
We heard from a lot of you – all over Georgia – who shared their memories and thoughts with us. GCDD wanted to honor Dawn and the impact that she made on agency leaders, legislators and families.
“When Dawn was born and diagnosed with muscular dystrophy, her life expectancy was about 10 years. She was the MD poster child in 1984, met President Reagan and graduated as valedictorian from Temple High School and magna cum laude from Georgia Tech in chemical engineering. The Tech fight song was played at the end of her services as her heartbroken parents left their pews. She was a star everywhere she went, admired by all and fiercely determined to succeed on behalf of others.
[Advocates at the Capitol] do not always enjoy a positive image from the public, but Dawn made us all better people by her presence and advocacy... It is impossible to state how much she will be missed, and we all feel the painful gap from her absence in the work world of politics. May you rest in peace, Dawn, and thank you for your service.” – Representative Mary Margaret Oliver, Georgia District 82
“We were saddened to hear this news! She was a great advocate and one of the first folks I met when I moved here who literally helped me understand “the ropes.” Our condolences to GCDD and her family.” –David T. Wilber, Executive Director, Diversified Enterprises
“She will be missed but will be remembered as a champion for all those experiencing disability and for her dedication to her advocacy work.” –Beate Sass, photographer
“Dawn was not only a subscriber of Georgia Lobby, but she was a friend that both Brooke Oakley and I enjoyed interacting with daily during session. Dawn worked hard with a heart for GCDD. Always a smile on her face and ready for the business of championing the cry of those with disabilities. Both Brooke and I will sorely miss her this coming session and we already do miss her now.” – Pamela Adams and the Georgia Lobby Team
Tap Into Your Self-Advocacy Power!
October celebrates National Disability Employment Awareness Month (NDEAM), and this year, the theme is The Right Talent, Right Now.
And what better way to bring that message home than to announce the return of GCDD's Take Your Legislator to Work Day! And this year, we are putting the power in your hands!
The annual employment advocacy event provides an opportunity for employees with disabilities to invite their legislator(s) to visit them at work. It allows legislators and decision makers to see the far-reaching benefits to employers, employees and communities alike of hiring people with disabilities.
It’s also a great way to create opportunities for Georgians with disabilities to form and nurture relationships with their elected officials.
Here’s How You Can Take Your Legislator to Work!
Schedule Your DIY (Do It Yourself) Visit
Plan Your Itinerary
- Plan for a tour that should be approximately 30-45 minutes. Be sure to highlight where you work and what your job responsibilities are, and introduce the legislator to your co-workers.
- If you work with a job coach, or receive another form of support, try to include that person in the conversation with the legislator.
- Be sure to include your employer and available co-workers in the conversation, as their perspectives will be very important to the legislator.
- Although it is important to include the co-workers, the job coach and the employer in the discussion, the visit should primarily focus on your experience as the employee.
On the Day of the Visit
- Be on time to welcome your legislator.
- Share with your legislator why they should support competitive, integrated employment, funding for waivers, Medicaid home and community-based services, Employment First and inclusive post-secondary education.
Share Your Story with GCDD!
Even though the nation’s focus is on the 2020 general election, there are elections happening this year too on November 5, 2019!
Across the state, local elections are happening from Gwinnett to DeKalb to Sumter counties and all across Georgia. These are as important as federal elections. Here, you vote for city council persons, school board members, and other officials that govern your local community. These local lawmakers are key to making sure that the town you call home is also working on behalf of people with developmental disabilities and their families.
Check your local newspapers to see if there are elections being held in your area or connect with your county liaison to find out more information.
The Disability Vote Counts! series is a finalist in Content Marketing Awards!
The 2018 Disability Vote Counts! series published in Making A Difference was a finalist in the 2019 Content Marketing Awards. The four-part series informed and educated people with disabilities about the midterm elections and candidates and also featured a guide to getting out the disability vote!
To read more in Making a Difference magazine, see below:
Download the pdf version of the Fall 2019 issue.
Download the large print version of the Fall 2019 issue.
Register! Educate! Vote! Use Your Power! Making the Disability Vote Count
by Hanna Rosenfeld, GCDD Planning & Policy Development Specialist
Only 65.9% of Georgians are registered to vote.
Out of the approximately 10.5 million people that call our state home, only about 6.9 million are registered to vote. Which means there are around 3.5 million Georgians going about their daily lives, unregistered to vote. Abysmal if you ask me. While some of the 3.5 million are ineligible to vote due to age, legal status, residency status or past convictions, quite a number are eligible to vote in our state. That means we have a lot of work to do.
Undoubtedly, voting is the bedrock of our society. While we could debate the merits of requiring voters to pre-register, the reality is that in order to vote in Georgia, you must be registered to vote. Registering to vote is the very first hurdle each of us must face when it comes to voting. There are a variety of reasons people don’t end up voting on election day, from lack of childcare to lack of transportation, but don’t let registration be the barrier stopping you from voting.
With National Disability Voter Registration Week occurring from July 15 to 19, the time to register is now. Chances are you know one of those 3.5 million Georgians who are not registered to vote. Make a point of asking your friends and family if they are registered to vote. It is so easy to do. All you have to do is visit the Georgia Secretary of State’s “My Voter Page” website.
Even if you think you are registered, it is always a good idea to double check well in advance of election day. In the process of writing this article, I discovered I was no longer registered to vote. Because I had recently moved to a different county, I needed to update my voter registration. Let this be a reminder that anyone, including the person charged with writing an article about voting in Georgia, can forget to change their address. Even if you think you are registered to vote, make a point of double checking that everything is good to go.
Once you are registered, the next crucial step occurs when you actually cast your ballot. For some of us, that can be rather tricky. We might have to ensure we have suitable identification or find accessible transportation to reach our polling location. Sometimes the hurdles to vote can feel overwhelming. It is imperative that we each keep working to ensure each and every eligible voter is registered and casts their ballot on election day.
Casting your ballot is essential. Registering to vote is no good unless you cast your ballot for a candidate. If we want our leaders to pay attention to us, they must know that the disability community is a community of voters. Some of us may not have deep pockets to make large campaign contributions, but we all have the ability to cast a ballot. True, money often means power. However, when we all band together to cast our ballots, we amplify our power and impact.
While we may not be electing a new US president any time soon, a great number of local elections will be occurring across our state in the coming year. In some ways, local elections are even more important because your ability to impact the result is magnified. Point of fact, the very first election I voted in was decided by only 90 votes. Out of the over 40,000 people that cast their ballots that day, it was 90 people who really made the difference. Some people think that just one vote has no value. They are wrong. Polling and predictions only get you so far. Until the votes roll in, there is no foolproof way to know what the margin of victory or defeat will be. Ninety votes were all it took that day in Cobb County. Will you be the next 90? I sure hope so.
Let us be clear. I don’t care who you vote for. The Georgia Council on Developmental Disabilities does not care who you vote for. We just care that you vote. Disability activist Justin Dart once said, “Vote as if your life depends on it, because it does.” As members of the disability community, we should all be acutely aware of the impact government has on our lives. From Medicaid to Social Security, government programs are often a key part of attaining a life well lived in the community. We have no excuse for failing to vote in every election we are qualified to vote in. If we don’t vote, then we have no control over the decisions our leaders might make and how that might impact our very lives.
No candidate or political party has the market cornered on disability issues. In many cases, candidates don’t even have a stance on issues important to our community. If we start showing up to vote in large numbers, you bet your boots candidates will start learning about our community and the issues we care about. And if no candidate speaks your truth, consider running for office yourself – local offices like city council, school board, county commissioner or even the State House are incredibly achievable.
If running for office is something that appeals to you, be sure to check out the National Council on Independent Living’s recently archived series of webinars, “Elevate: Campaign Training for People with Disabilities.”
What’s Happening in Georgia
While it’s off season, many individuals are announcing their candidacies for the 2020 election from city councils to state legislators to commissioners. Also, the Georgia House of Representatives and Georgia State Senate will hold elections, including federal seats for the US Senate and House of Representatives in 2020. The Atlanta Journal-Constitution provided a latest update on who is seeking office next year, with many more to be added to the ticket.
To know who might be running for your district, city council, school board or other local, state and federal offices, engage with your local newspapers or news stations or resources like Open States or Ballotpedia.
Voting System Changes in Georgia
Recently, Governor Kemp signed House Bill 316 into law. Passed by a 101 yea/69 nay in the House and 35 yea/1 nay in the Senate, HB 316 makes changes to Georgia’s voter registration and voting system.
Undoubtedly, the most notable change for most voters will be Georgia’s new in-person voting machines. While there is still a great deal that must be decided, HB 316 calls for Georgia to adopt new voting machines.
Many of you will be familiar with the electronic touch screen voting machines we have had for the past two decades. HB 316 calls for the adoption of electronic ballot markers, defined as “an electronic device that does not compute or retain votes; may integrate components such as a ballot scanner, printer, touch screen monitor, audio output and a navigational keypad; and uses electronic technology to independently and privately mark a paper ballot at the direction of an elector, interpret ballot selections, communicate such interpretation for elector verification and print an elector verifiable paper ballot.”
To the voter, the most obvious change will be the final step whereby after selecting your vote, you receive a printed receipt. In the past, you simply clicked submit and handed back the electronic card. Still, there is a lot we do not know at this time. Georgia’s Secretary of State, Brad Raffensperger, has issued an RFP (i.e., request for proposals) to solicit applications from six companies to supply Georgia with our new system. Until the company is selected, we won’t truly know what our new system will look like.
Moreover, the process by which registered voters are removed from the voter rolls has been updated, likely for the better. While in the past a voter was removed after three years of inactivity, voters will now be removed after five years of inactivity. This is significant because there are a great deal of misguided voters in Georgia that only vote in the presidential election. Since presidential elections come around every four years, such voters in the past may have found themselves removed from the voter registration rolls. Of note, inactivity is defined as failing to file an updated voter registration card, failing to file a change of name or address, not signing a petition which is required by law to be verified by the election superintendent or Secretary of State, not signing a voter certificate, failing to apply or vote absentee and failing to confirm a continuation of address notice.
Another key change is the reduction of voting machines per person. Previously, one machine was required for every 200 voters. HB 316 has changed this to one machine for every 250 voters. This is significant, as this could lead to longer lines at the polls. Only time will tell if the new machines move people through fast enough to accommodate the reduction of machines.
Additionally, restrictions for closing or changing polling locations have been implemented. Indeed, within 60 days of a general primary, general election or general election runoff, no changes may be made to a polling location. In the case of a special primary, special election or special election runoff, HB 316 restricts changes up to 30 days in advance of the election.
Importantly, the requirement that all polling locations be accessible to voters with disabilities has not changed in any way. Still, we know that there exist polling locations in Georgia that are not accessible. Should any of us encounter a polling location that is not accessible, it is our duty to report that location to your local board of elections, to the Secretary of State’s Office and to the Georgia Advocacy Office.
Public Policy Calendar:
- July 15-19, 2019: National Disability Voter Registration Week
- October 2019: Take Your Legislator to Work Day
- January 13, 2020: First Day of the 2020 Legislative Session
- 2020 Advocacy Days: January 29, February 11, February 20, February 27, March 11
Atlanta Public Schools – School Board
- September 17, 2019: Election Day
- October 15, 2019: Runoff
July 15 - 19, 2019 IS NATIONAL DISABILITY VOTER REGISTRATION WEEK
What You Can Do to Celebrate:
To read more in Making a Difference magazine, see below:
Download the pdf version of the Summer 2019 issue.
Download the large print version of the Summer 2019 issue.
2020 Legislative Preview – Getting Ready to Advocate
by Alyssa Lee, PsyD, GCDD Public Policy Research & Development Director
Starting on Monday, January 13, 2020, the Georgia General Assembly will begin its race towards the finish line. The Georgia Constitution only grants the assembly 40 days to complete all its work. While the days do not have to be continuous, the assembly’s traditional deadline of late March or early April does not allow for much dawdling.
With that in mind, it is never too early to double check who your elected officials are at Open States. Make sure to enter your entire home address, as multiple elected officials can represent the same ZIP code. You can also confirm their contact details and committee assignments at the official Georgia General Assembly website.
Remember, your elected officials cannot represent your opinions if you have never taken the time to educate them on issues of importance to you. Whether you have new folks or old folks, be sure to take some time to re-introduce yourself. Your elected officials work for you, so put them to work for your interests! A government of the people and for the people only works if the people raise their voice. We at the Georgia Council on Developmental Disabilities (GCDD) are counting on you to do just that.
For a quick recap on how a bill becomes a law in Georgia, be sure to check out Georgia Public Broadcasting’s short video on the legislative process.
2020 Session Theme: Budget, Budget, Budget
As the Georgia General Assembly’s only required task, the passage of our state’s balanced budget is always a highlight of each year’s session. However, this year is sure to be one for the books as Governor Kemp, in early August, directed state agencies to propose massively impactful, 6 percent cuts to their fiscal year 2021 budget. To put that into perspective, the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) alone was tasked with finding areas to cut, totaling approximately $56 million. Agencies submitted proposals in September, which provided us all with a preview of what to monitor during the upcoming session.
Although many of the cuts come from state agencies’ administrative and operational budgets, there are service areas that will likely be impacted. For example, DBHDD has proposed cutting approximately $1 million from each of the following developmental disability service areas: Marcus Autism Center, family support services and assistive technology and research.
Also impacted by the governor’s directive will be DBHDD’s yearly proposal for new Medicaid NOW/COMP waiver slots. Typically, DBHDD requests additional funds for approximately 125 new waivers each year. In addition, they request funds to annualize approximately 250 waivers from the previous fiscal year. For the upcoming fiscal year, DBHDD only requested to annualize 125 waivers, and they are not requesting funds for any new NOW/COMP waivers. Given the waitlist of over 6,000 people in Georgia for NOW/COMP waivers, GCDD is very concerned by this change.
Finally, although GCDD receives primarily federal funding to continue the great work being done around the state, GCDD does receive state funding for our fantastic IPSE programs. GCDD is particularly concerned that the 6 percent budget cut will mean that IPSE funding is scheduled for a $50,000 cut for fiscal year 2021!
It is important to note that the changes are only proposed changes as of now, and cuts could be reorganized as the session progresses. Due to the possibility of additional cuts to services we care about, GCDD will be relying on your strong advocacy skills throughout session. Following Governor Kemp’s State of the State address in mid-January, the Governor’s Office of Planning & Budget will officially release Kemp’s budget recommendations. While ultimately the House of Representatives and the Senate decide what is included in the budget, the governor’s recommendations usually serve as guiding light. Be on the lookout for many updates on the budget, including what you can do about the proposed changes. We will also be including budget updates in our public policy calls and newsletter.
GCDD’s 2020 Public Policy Direction: Disability in ALL Policy!
The Georgia Council on Developmental Disabilities is governed by a 27-member board, appointed by the governor and comprised of at least 60 percent individuals with developmental disabilities and family members. Other members include policymakers that represent various agencies and organizations having a vested interested in persons with developmental disabilities.
Each year, the council comes together in the fall to formulate a legislative agenda to bring about social and policy changes that promote opportunities for persons with developmental disabilities and their families to live, learn, work, play and worship in Georgia communities. This year our council approved changes to our public policy department, which will allow GCDD to engage with legislators to ensure people with developmental disabilities are considered in ALL policy. Our 2020 legislative priorities are as follows:
HEALTH AND WELLNESS
We are committed to advancing sound policies that improve the overall health (physical, mental, emotional and sexual) of people with developmental disabilities and their loved ones. The following topics will be highlighted in our health and wellness policy initiative:
We will always include eliminating the waiting list for NOW and COMP waivers in our policy initiatives until the waitlist in Georgia is ZERO. These waivers allow individuals with developmental disabilities who qualify for an institutional level of care to receive the supports they need to live healthy lives in the community. As of August 2019, 6,048 Georgians with developmental disabilities were on the waiting list for a NOW or COMP waiver. Our advocacy around this very important issue remains as crucial as ever.
- The Shortage of DSPs: Workforce Crisis
We believe that a competent, well-trained and caring workforce of direct support professionals (DSPs) is essential to the health and wellbeing of individuals with disabilities who utilize home and community-based services. We support strategies to address this crisis so people with disabilities can have the care they need.
- Gracie’s Law (Organ Transplant Discrimination)
We support the Nobles family and Representative Williams in their efforts to ensure that people with developmental disabilities are not denied an organ transplant simply because of their disability status.
Inclusive education policies, starting with early childcare settings and continuing through postsecondary education, are necessary to assist Georgians with developmental disabilities in reaching their full potential. Currently, our education focus includes:
We believe that all students, regardless of ability, should have access to postsecondary education programs in the state of Georgia. Inclusive postsecondary education (IPSE) programs provide students with intellectual and developmental disabilities access to education not otherwise available. Currently there are nine IPSE programs in Georgia serving approximately 139 students. They are Kennesaw State University’s Academy for Inclusive Learning and Social Growth, University of Georgia’s Destination Dawgs, Georgia Institute of Technology’s EXCEL, Georgia State University’s IDEAL, Columbus State University’s GOALS, East Georgia State College’s CHOICE, Georgia Southern’s Eagle Academy, Albany Technical College’s LEAP and the University of West Georgia’s Project WOLVES.
GCDD is committed to the growth and support of IPSE programs because we recognize their value in preparing students to live increasingly independent lives within their communities.
GCDD works to address the targeted disparity of African American and other minority students who are disproportionately identified in special education. They often end up in the Georgia Network for Educational and Therapeutic Support (GNETS) system or expelled from school, which leads to a higher probability of incarceration. We support policy initiatives aimed at reducing the number of students being placed in the school-to-prison pipeline and look forward to the recommendations of the Senate Study Committee on Educational Development of African American Children in Georgia.
GCDD supports Georgia’s vision for a public system that funds employment supports first. We will work to advance policies that improve competitive, integrated employment options for Georgians with developmental disabilities. Some policy proposals include:
- Phasing out 14(c) certificates that currently allow people with disabilities to be paid subminimum wage
- Increasing the budgets of DBHDD and the Georgia Vocational Rehabilitation Agency (GVRA) to assist the organizations in increasing the hourly rate of Georgia’s supported employment services
- Reallocating funds from day habilitation program rates, which continue to be well above the national average, to supported employment rates, which continue to be well below the national average
Reliable transportation options are critical to ensure people with developmental disabilities are truly included in all aspects of their communities. GCDD supports policies that improve current transportation options, including House Bill 511 (HB 511), which aims to create a state agency focused on transit. HB 511 also includes a committee whose purpose is to ensure vulnerable populations, including people with low income, people with disabilities and people who are aging, have access to appropriate transit options. We believe this legislation will improve transportation for people with disabilities, particularly in the rural parts of our state.
GCDD supports policy solutions that provide the infrastructure and funding necessary to address the shortage of accessible, affordable housing options for people with developmental disabilities.
We believe Georgia’s budget highlights our state’s priorities, and GCDD strives to educate lawmakers on the importance on maintaining/increasing budget line items that impact Georgians with developmental disabilities. As described in our budget highlight, we believe it will be critical during 2020’s session to be vigilant of any changes to budget line items that might impact the supports and services on which people with developmental disabilities and their families rely. We will strive to keep each one of you updated on changes, and we know that you all will be ready to advocate when the time comes!
Frequently Asked Questions:
Q How do I find out when legislative committees are meeting?
A You can find the schedule for the House of Representative online at the State House calendar portal and the schedule for the Senate at the Senate calendar portal. If you plan to attend a committee meeting in person, plan to be flexible, as meeting times often change suddenly. Additionally, you can often watch committee meetings online. View State House meetings here. View State Senate meetings here.
Q How do I find the status of a bill?
A If you know the bill number, you can track it by visiting the official Georgia General Assembly website. Or you can read GCDD’s Public Policy for the People e-newsletter and participate in our public policy calls.
Q How can I help my school-aged child learn about the legislative process?
A Consider signing them up to be a page. Pages deliver messages to the senators and representatives when they are meeting in the legislative chambers. It is such an important job that there is even a Georgia law, O.C.G.A. §20-2-692, that states “children who serve as pages of the General Assembly during the school year, either at regular or special sessions, shall be credited as present by the school in which enrolled in the same manner as an educational field trip, and such participation as a page shall not be counted as an absence, either excused or unexcused.” To learn more about becoming a page, visit the Senate page program site and the House page program site.
How to get involved
- Attend GCDD’s Advocacy Days: 1/29, 2/6, 2/19, 2/27, 3/11
- Read GCDD’s e-newsletter Public Policy for the People 1/20, 2/3, 2/17, 3/2, 3/16, 3/30
- Participate in GCDD’s public policy calls at 9:30 AM on 1/13, 1/27, 2/10, 2/24, 3/09, 3/23
Dial-in #: 605-475-4063, Access code: 737-091
- Join GCDD’s Advocacy Network
- Governor: Brian Kemp (Republican)
- Lieutenant Governor: Geoff Duncan (Republican)
- Secretary of State: Brad Raffensperger (Republican)
- 56 State Senators: (35 Republicans / 21 Democrats)
- 180 State House: (106 Republicans / 74 Democrats)
2020 Advocacy Days are Here!
Join the Georgia Council on Developmental Disabilities (GCDD) at the Georgia State Capitol in downtown Atlanta during the 2020 legislative session to learn about policies affecting people with disabilities, and join advocates from across the state in speaking with elected officials about these very important issues.
Each day will focus on a different topic that affects Georgians with disabilities.
January 29 – Gracie’s Law (Organ Transplant Discrimination)
Gracie’s Law, written to avoid any organ transplant discrimination against people with disabilities in Georgia, will be introduced to the Georgia legislature in January 2020. While the Americans with Disabilities Act (ADA) denies discrimination based on any disability, there is still a lack of federal enforcement. (Read more about Gracie’s Law on pages 12-13.)
February 6 – Inclusive Post-Secondary Education (IPSE)
Inclusive college programs across the state offer students with intellectual and developmental disabilities (I/DD) a variety of experiences and opportunities for growth as they prepare for the next chapter of their lives. With IPSE, students with I/DD can now realize their dream of continuing their studies in a university or college setting with their peers.
February 19 – Home & Community-Based Services
GCDD will always include eliminating the waiting list for NOW and COMP waivers in our policy initiatives until the waitlist in Georgia is ZERO. These waivers allow individuals with developmental disabilities who qualify for an institutional level of care to receive the supports they need to live healthy lives in the community. As of August 2019, 6,048 Georgians with developmental disabilities were on the waiting list for a NOW or COMP waiver. Our advocacy around this very important issue remains as crucial as ever given the proposed state budget cuts and the ZERO waiver slots recommended by DBHDD for Fiscal Year 2021.
February 27 – School-to-Prison Pipeline (SToPP)*
With advocates, GCDD will educate and inform lawmakers to develop and implement a plan to reduce the number of African American males in special education classes who are at risk of being pushed out of school and into the criminal justice system.
The school-to-prison pipeline is the funneling of children from the public schools into the juvenile and criminal justice systems, in part, due to zero-tolerance school discipline policies, disproportionate application of student suspen-sions, high-stakes testing and administrative practices that adversely affect children of color, poor children and children with learning disabilities. (Read more on pages 18-19.)
March 11 – Employment*
GCDD will work to advance policies that improve competitive, integrated employment options for Georgians with developmental disabilities. These include: prohibiting certificates that currently allow people with disabilities to be paid subminimum wage; increasing the hourly rate of Georgia’s supported employment services; and reallocating funds from day programs rates to supported employment rates, which continue to be well below the national average.
What to Expect Each Advocacy Day
Each day kicks off at 8 AM at the Central Presbyterian Church, across from the Gold Dome (201 Washington St SW, Atlanta, GA 30334), where leaders from GCDD and other organizations will train and teach advocates how to approach legislators, make a connection and discuss the topics that are important to you. After the interactive training, advocates and leaders will head over to the Gold Dome to meet with legislators. Event ends at 12:30 PM.
8:00 AM – Check- In & Breakfast
9:00 AM – Welcome Remarks & Training
10:00 AM – Leave for Capitol
10:30 AM – 12:30 PM – Meet Legislators at the Capitol
All registrants should register on Eventbrite to attend the Advocacy Days of their choice. Organizations and agencies should complete the group registration option.
All registrants need to provide their home address so the GCDD public policy team can identify your district and legislators.
Frequently Asked Questions (FAQs):
From what to bring and where to park, GCDD has you covered. Check out the FAQs, and be prepared for a full day of advocacy.
Become an Advocacy Team Lead
Geared at preparing advocates to take a leadership role at the annual advocacy event, team lead volunteers will learn how to navigate the Georgia State Capitol and support attendees in speaking with their legislators. Team leads will earn $100 per each Advocacy Day for which they volunteer. Each individual must complete one training and fulfill all the responsibilities as determined by GCDD’s public policy team.
Sign up to be a Team Lead.
MARK YOUR CALENDARS AND JOIN US!
Meet Charlie Miller, GCDD’s New Legislative Advocacy Director
As the legislative advocacy director, Charlie Miller leads the Georgia Council on Developmental Disabilities (GCDD) in its community engagement and advocacy efforts in the state legislature. He also works alongside Georgians with disabilities and other stakeholders to build coalitions around issues important to the disability community.
Charlie brings over 10 years of advocacy experience to the team. He joins GCDD from the Georgia Vocational Rehabilitation Agency, where he most recently served as the legislative liaison. Charlie began honing his skills in advocacy as a student at the Academy for Inclusive Learning and Social Growth at Kennesaw State University (KSU). While attending KSU, he served as an intern in the public relations and community engagement departments. In this role, Charlie collaborated with nervous students and their parents on navigating campus life, managing program expectations and more.
After completing his program at KSU, Charlie continued developing his expertise in leadership through community engagement. For example, he has enjoyed sitting on the boards for such organizations as the Statewide Independent Living Council and the Cobb County Transit System Advisory Board. Charlie is also a member of ADAPT, a national grassroots community that organizes disability rights activists to engage in nonviolent direct action; the Association of University Centers on Disabilities (AUCD), a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families and communities; and TASH, an international leader in disability advocacy whose membership is comprised of a community committed to positive and lasting change in the lives of people with significant disabilities.
To further engage with his community, Charlie is currently enrolled in a graduate-level program at Georgia State University (GSU). As part of GSU’s Leadership Education in Neurodevelopmental Disabilities (GaLEND) program, he helps shape the futures of emerging leaders in the disability community.
“I’m thrilled to continue my work in advocacy at GCDD,” said Charlie. “Being able to advocate for the many issues that affect the disability community – whether it’s access to reliable transportation, inclusion in education or access to healthcare – is something I’m very passionate about.”
Charlie lives in Decatur with his fiancé and two cats, Harper and Hugo. A Georgia native, he is the proud son of Butch and Teresa Miller and brother to Cole and Carey. When he’s not in the office or at the Capitol, Charlie enjoys staying active by participating in marathons and obstacle-course races.
The Fight for Gracie’s Law
by Jennifer Bosk
As far as gender reveals go, this was a simple one. No cupcakes with pink or blue centers, no boxes of helium-filled balloons. Erin and David Nobles had agreed to a genetic test, suggested because of her late-age pregnancy, but mostly because she knew it would be an easy way to find out if she was expecting a boy or girl.
Erin eagerly answered the doctor’s office phone call about the test results only to hear an expressionless voice say, “It’s a girl. She has Down syndrome.” “There was no joy in the nurse’s voice, it was flat, no hint of celebration,” recalls Erin.
The Nobles promptly changed doctors, finding one who celebrated the impending birth of their baby, Gracie Joy. At 24 weeks into the pregnancy, the Nobles were told the baby had an atrioventricular (AV) canal defect – a large hole in the center of her heart. Approximately 45% of children born with Down syndrome have some form of a congenital heart defect.
Born on March 9, 2019, Gracie Joy spent 17 days in the neonatal intensive care unit (NICU). A few weeks later it was time to have her heart surgery, and she entered the pediatric intensive care unit (PICU) at Children’s Hospital of Georgia (CHOG). In total, Gracie Joy stayed at CHOG for eight weeks working to gain weight and fighting a bout of pneumonia, which delayed her heart surgery.
Eventually Gracie Joy had a successful surgery and was finally able to go home.
While spending a quiet evening at home, David and Erin were relaxing – watching TV, scrolling through their phones while their kids slept. Erin was reading more about Down syndrome and disabilities in general. Something caught Erin’s eye, and she turned to David and read him information that shocked them both – people with disabilities do not receive equal consideration for organ transplants. “Do you realize if Gracie Joy needed an organ transplant, we would have had to fight to get her on a list?” said Erin.
“I was blown away! How is that even possible?” said David. “I didn’t want to talk or even think about it. It’s something we could easily have been faced with.” At that moment, the Nobles realized this was an opportunity to do something for their daughter and for all people with disabilities in Georgia.
Gracie’s Law, written to avoid any organ transplant discrimination against people with disabilities in Georgia, will be introduced to the Georgia legislature in January 2020 by Representative Rick Williams (R – Milledgeville, District 145) and Senator Burt Jones (R – District 25). While the Americans with Disabilities Act (ADA) denies discrimination based on any disability, there is still a lack of federal enforcement.
“Even with federal protections in place, children and adults with disabilities continue to face an unfounded amount of discrimination by the medical community,” said Rep. Williams. “For far too long, people with disabilities have been denied organ transplants based on misconceptions about their quality of life, which consequently impacts their health care. This legislation seeks to change that stigma and ultimately save lives.”
Currently, only 12 states have laws in place to stop organ transplant discrimination: California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana.
“It’s a very important issue, and it’s very emotional,” said Rep. Williams. “This is good legislation. It’s nonpartisan, and everyone is on board. Legislators have been coming up to me saying they are ready to sign it.” Erin explains it is important to have a state law so that if there is an issue, it can be fought at the state level.
She paints the picture of someone with a very sick child with a disability having to find a lawyer to represent them at the federal level, filing with a federal court, waiting to get on the federal docket – all overwhelming, time consuming and expensive. “If you have a child with disabilities, get your boxing gloves on – you need to fight,” Erin said.
The Nobles also point out it is not simply the organ transplant center that is doing the denying. Many times, doctors treating patients with disabilities don’t even make a referral to a transplant center. Parents are told to take their child home and spend the remaining time with them. “We’re dealing with old mindsets, doctors assuming that children with disabilities are not eligible for organ transplants. That’s our biggest issue,” said David.
Gracie’s Law was written and submitted to the Georgia legislature quite rapidly. After the Nobles’ talk that Friday night about organ transplants for people with disabilities being denied, Erin reached out the following morning to Tami and Wayne Pearl in Louisiana who had already submitted their own request for a law to their state legislature called Evie’s Law, named for their daughter with Down syndrome. Wayne immediately sent his five-page bill for the Nobles to review and gave them advice on selecting the right member of the Georgia General Assembly to sponsor the bill, suggesting the Nobles find a legislator who aligned with their morals and beliefs.
Discussing their Georgia legislators, David, who works at the Georgia Department of Community Supervision in Milledgeville, recalled meeting Rep. Williams at several town meetings. “I knew the kind of person he is. He was definitely someone I could align with; my beliefs fit his beliefs.”
Rick reached out to Rep. Williams. “I went through my spiel, and he told me [to] send him what I had, and [he’d] be in touch.” Ten minutes later Rep. Williams called Rick to tell him that Gracie’s Law had been sent to the legislative council, and the following day Sen. Jones said he would submit the bill on the Senate side.
Looking back, David said, “When we got that phone call from the doctor’s office about Gracie having Down syndrome, it was like a funeral. We couldn’t even decorate the nursery. But that was a year ago, and we’ve made it through. Now we are introducing legislation to make a difference in our community and our state. Who would have thought this is where we would be?”
The Georgia Council on Developmental Disabilities will be advocating for Gracie’s Law alongside the Nobles family during its 2020 Advocacy Days. To learn more, visit www.gcdd.org
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