Thank you for taking the time to read GCDD’s 2021 Crossover Edition of Public Policy for the People! We have had a busy couple of months with the 2021 legislative session, with Crossover Day taking place Monday, March 8th. What is Crossover Day? It is Day 28 of Georgia’s legislative session and represents the final opportunity that a bill has to pass at least one chamber (House or Senate) if the bill is to move on in the lawmaking process. If a bill does not pass one chamber before Crossover Day, that means it cannot pass and become law during the current legislative session.
Since we just made it through Crossover Day, and have a good idea of what bills are still active, we wanted to take the time to update you on all the details! Take a look at a few of the bills we are watching most closely, and the action steps you might take to make your voice heard:
House Bill 531 Description: This bill is the House version of a voting omnibus bill meaning it contains numerous proposals to change the way we vote in Georgia. GCDD opposes this bill as some of the proposals would make it harder to vote like restricting drop box locations, requiring additional ID for absentee ballots, and limiting early voting opportunities.
Location: This bill passed the House and is in the Senate Committee on Ethics. As of right now, the Committee is scheduled to meet Monday, March 15th at 3:30 pm and Wednesday, March 17th at 8:00 am. HB531 is on the agenda for the March 15th meeting as “hearing only”, meaning there will be no public testimony. You can livestream the committee meeting HERE.
Action: It is up to US to make sure we do not allow lawmakers to make it harder for us to vote! Contact your state senators and let them know what you think. Also, keep an eye out for any action alerts from GCDD as there might be future opportunities to provide public testimony on this bill.
Senate Bill 241 Description: This bill is the Senate version of a voting omnibus bill. It contains similar proposals as HB531 but also proposes to eliminate no-excuse absentee voting. GCDD opposes this bill and has serious concerns about the proposal to eliminate no-excuse absentee voting as approximately 75% of people with disabilities voted absentee in the previous election!
Location: This bill passed the Senate and is in the House Special Committee on Election Integrity. There are currently no future meetings of the Committee scheduled. You can keep an eye out for future meetings HERE.
Action: Again, it is up to US to make sure our elected officials do not make it harder for us to exercise our right to vote! Please contact your state representatives and let them know your thoughts. Also, stay tuned for future action alerts from GCDD as there might be future opportunities to provide public testimony.
House Bill 290 Description: This bill was originally a hospital visitation bill, but it was changed during its time in the House Committee on Human Relations and Aging to include a new “legal representative” who could make significant decisions on behalf of a patient, including managing financial matters and accessing medical or personal information of the patient’s. GCDD opposes this bill as we are concerned about the implications of expanding the abilities of a “legal representative” and what that might mean for the rights of people with disabilities in hospitals and long-term care facilities.
Location: This bill passed the House and is currently in the Senate Committee on Health and Human Services. The Committee is scheduled to meet on Tuesday, March 16th at 2:15 pm. There is not currently an agenda for the meeting.
Action: Let your state senator know your thoughts on the bill, and stay tuned to future action alerts from GCDD as there may be an opportunity for public testimony.
Gracie’s Law-HB128 Description: GCDD has supported this bill since it was originally introduced in 2020. HB128 bill would prohibit discrimination of potential organ transplant recipients based on disability status. People with disabilities have been denied life-saving organ transplants due to discriminatory ideas of healthcare providers regarding the abilities and quality of life of people with disabilities.
Location: This bill passed the House and is currently in the Senate Committee on Health and Human Services. The Committee is next scheduled to meet on Tuesday, March 16th at 2:15 pm. However, there is not currently an agenda for that meeting so we do not know if this bill will be heard.
Action: Reach out to Chairman Ben Watson’s office to educate them on the issue and request that the bill be heard in the Committee. You can also reach out to your state senator and ask that they support this bill being heard in the Committee. Also, stay tuned for future GCDD action alerts as there might be an opportunity to provide public testimony.
If you do not know who your state representative and senator is, please enter your full home address HERE. And, as always, if you need additional assistance or have any questions, reach out to the members of GCDD’s Public Policy Team: Alyssa Miller, Public Policy Research Director and Charlie Miller, Legislative Advocacy Director.
— Charlie Miller,GCDD Legislative Advocacy Director
Public Policy for the People provides public policy updates as it pertains to people with disabilities here in Georgia.
How in the world are you doing, advocates? The sun is shining, the birds are chirping and summer is here! We have made it through a rough and rocky legislative session, but that does not mean our advocacy stops.
Your state legislator is now back at home – reaching out and connecting with them is more important than ever. In this Public Policy for The People edition, we are going to go over our feature bill signing, summer advocacy strategy ideas, and many more topics.
During this session, our advocacy took many different forms from moving our Advocacy Days to a virtual platform to doing a lot of legislator visits via Zoom due to the Covid-19 pandemic.
But no matter what, we did not let anything get in our way of pushing for some great bills that impact people with disabilities.
Photo Credit: senatepress.net, Kessarin HorvathThis year, the Georgia Council on Developmental Disabilities (GCDD), along with the Down Syndrome Society of Atlanta, and Arc of Georgia worked to get HB 128 re-introduced and then pushed forward all the way to the desk of Governor Brian Kemp. We were excited to hear that the governor wanted to have this signed into law with the disability community by his side.
While we are extremely happy to see Governor Kemp sign some really good bills into law, now is the time to start planning our summer advocacy.
Georgia’s state Legislators are only in session January through April, which gives us a great opportunity to advocate about disability issues in their community.
When you are reaching out to your legislator, make sure you tell them that you are a constituent in their district. If you do not know who represents you, you can always look up your legislator on Open States. On this site, you will be able to find out who your state and federal representatives are.
This is a good resource for any advocate looking to get to know your state and federal officials. Every time you reach out about a disability issue, you create opportunities to teach them about the community members that they serve.
Now, that summer is upon us and your legislator is easing back into normal workdays, feel free to reach out and connect with them. Invite them to get coffee and join your next community event. They want to hear from you even when you don’t have a problem. They love knowing things that they worked on made an impact in your life.
In an attempt to better understand the disability community’s thoughts on the COVID-19 vaccine, GCDD’s Public Policy Fellow Naomi Williams spearheaded an effort to collect responses via a public survey.
We heard from 275 respondents, and two-thirds identified as parents of a person with a disability, and a little less than one-third identified as a person with a disability. An overwhelming majority, approximately 81 percent, reported that they wanted to receive the vaccine. In fact, approximately 66 percent of the respondents indicated that they had already received the vaccine. The primary reasons people listed for wanting to get the vaccine were to keep themselves safe and to keep their loved ones safe.
Of all respondents, approximately 13 percent indicated they did not want the vaccine, and another 6 percent stated they were unsure if they would or would not get the vaccine. The primary responses people provided for not wanting the vaccine, or being unsure of whether to get it, were that the vaccine was too new and a worry that there might be bad side effects from the vaccine.
Of important note is that people with disabilities were more likely to report not knowing where to get a vaccine and not having a way to get to a vaccination site as reasons they had not yet received a vaccine.
Although the sample size of this survey is small, it is encouraging to see that the majority of respondents had received a vaccine or indicated that they would like to receive the vaccine. We continue to see a need for additional education regarding the safety of the vaccine, as well as the disproportionate access barriers to the vaccine for people with disabilities.
— Alyssa Lee, PsyD, GCDD Public Policy Research and Development Director
Public Policy for the People provides public policy updates as it pertains to people with disabilities here in Georgia.
Hello, advocates! It is hard to believe that we have made it past the halfway mark of the 2021 state legislative session and are almost at Crossover Day, which will take place on March 8. Crossover Day occurs on legislative day 28 each year. It is important because in order for a bill to have a chance at passing and becoming law during that session, the bill has to be passed out of at least one chamber (i.e. the House or the Senate) by the end of Crossover Day. Luckily, we are at the beginning of our biennial session, meaning this is the first year of a two-year session. So if a bill you care about doesn’t pass one chamber before Crossover Day, it still has a chance of passing next year!
So what is the major theme of the 2021 session so far? VOTING! You might remember that back in our January Public Policy for the People article, we mentioned the likelihood that this session would be filled with new voting legislation. Well, that has certainly been the case with, at current count, over 40 voting-related bills filed just this session. Here are a few that we believe will have an impact on the disability community:
Senate Bill 241 This bill is the Senate’s version of a voting omnibus bill, which basically means it is a lengthy bill that covers numerous voting policies and includes ideas from other Senate voting bills that were previously introduced. These proposals include limitations to absentee voting, new voter ID requirements and many other changes to how Georgians could exercise their right to vote. The bill has gone through a few changes and continues to be amended. This bill is currently in the Senate Committee on Ethics.
Senate Bill 67 This bill would require Georgians to submit a photocopy or number of their Georgia identification card to apply for an absentee ballot. The proposal has raised concerns for the disability community as not all people with disabilities have identification cards. This bill has passed the Senate and is currently in the House Special Committee on Election Integrity.
House Bill 531 This bill is the House’s version of a voting omnibus bill. Similar to the Senate version (SB241), this is a lengthy bill that combines many of the earlier proposed voting changes into one large bill. It is likely that this bill will also undergo some changes and is currently in the House Special Committee on Election Integrity.
By clicking on the bill number, you can find updates on each one. If you are interested in letting your state representative and senator know how these bills might impact you, make sure to reach out to them via phone or email. If you do not know who your representative or senator is, please enter your full home address here.
To stay up to date during the 2021 legislative session, please join us each Monday at 9 a.m. for our Public Policy for the People calls led by GCDD Legislative Advocacy Director Charlie Miller. You can access the login information here.
Also, please join GCDD during our final Advocacy Day of the 2021 session, taking place on March 10. This day will focus on competitive, integrated employment for people with disabilities. Please register here.
GCDD Public Policy Team Public Policy Research & Development Director Dr. Alyssa Miller: Legislative Advocacy Director Charlie Miller:
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
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.
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!
You made the connection. You had the meeting. And now we want to know!
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:
PUBLIC POLICY FOR THE PEOPLE: The Disability Vote Counts!
“VOTE LIKE YOUR LIFE DEPENDS ON IT, BECAUSE IT DOES!” – Justin Dart
In this edition of Public Policy for the People, we will be focusing on the upcoming 2020 election, which sees key national and state seats up for grabs. This election will certainly be one for the history books, as much of our attention has been paid to the current COVID-19 pandemic, making this campaign season unlike any in modern history. To prepare you for the upcoming election, we want to make sure you are an informed voter, not only on the candidates and their platforms, but also on your rights as a voter. Let’s discuss which seats are up for election and where the candidates stand on issues important to the disability community.
Candidates for President of the United States
Every four years, we elect the next incoming president. During this presidential election, we will choose between the current president and a challenger. We have been encouraged to see more robust disability plans during this presidential race than in years prior. Below is a brief overview of each candidate’s disability platform.
President Donald J. Trump is the 45th president of the United States of America representing the Republican Party. Trump ran as a member of the Republican Party, and he beat the Democratic challenger former Secretary Hillary Clinton by 77 votes in the Electoral College. You can read more about Trump’s campaign here.
As an incumbent president, we can look to Trump’s proposed plans, as well as his record on key issues while in office. Although disability policy is not specifically mentioned, we can look at the areas where we most often see policies created that impact people with disabilities: employment, education and healthcare.
Employment: Trump touts his influence on an improved economy, which has seen record job growth and increased wages for workers. Of note, disability employment is not highlighted, and the unemployment rate for people with disabilities continues to hover around 70 percent.
Education: Trump and his administration state their support on the expansion of school choice. It is important to note that many in the disability community have voiced strong concerns regarding school choice expansion, as private education systems are not bound to the same requirements to support children with disabilities as the public school system.
Healthcare: Trump has called for the repeal of the Affordable Care Act insurance mandate, which means people would no longer be penalized for not having health insurance. However, concerning healthcare policy in the disability community, Trump has consistently proposed budget cuts to Medicaid and other disability-specific programs, such as the Special Olympics, which includes a strong initiative to improve the health and wellness of people with disabilities.
Additional policy considerations:
Access to Housing: Although no official statement appears on the campaign website, the candidate’s position on this issue is made clear in the Housing and Urban Development (HUD) agency press statement about its new budget. Some of Trump’s budget modifications include $2.8 billion to assist the fight to end homelessness; a record $425 million to boost healthy homes; and also $41.3 billion to help Americans pay rent. However, it is important to note that Trump’s budget proposal for HUD had push back from both Republican and Democratic lawmakers, as the proposal requested a 15.2 percent cut, which would translate to an $8.6 billion budget cut.
Transportation: Although no official statement appears on the campaign website regarding transportation for people with disabilities, the candidate did address transportation for people with disabilities in his interview with the American Association of People with Disabilities (AAPD) in 2015. He states, “This is a critical question that must be dealt with by the federal government. We should integrate into our investments in infrastructure and transportation, assets and policies that provide for the services required by people with disabilities, to the extent possible.”
It is important to note that as a challenger, we do not yet have specific examples of what actions Biden has taken as president. We can, however, provide information regarding his promises on disability issues. Some of Biden’s disability policy proposals include:
Employment: Biden has stated his support for expanding competitive, integrated employment opportunities for people with disabilities. He has also promised to phase out subminimum wage for people with disabilities by supporting and getting passed the Transformation to Competitive Employment Act.
Healthcare: Biden has promised to increase access to home and community-based services (known in Georgia as NOW/COMP, ICWP and CCSP Medicaid waivers); invest in the direct care workforce; and support informal and family caregivers.
Transportation: Biden has promised to address accessibility barriers to transportation for people with disabilities. He specifically indicated support for incorporating universal design into new modes of transportation and ensuring the accessibility of air travel.
Dr. Jo Jorgensen is a senior lecturer in psychology at Clemson University. Dr. Jorgensen does not have a disability-specific platform. As she has not held public office, we do not have access to any previous actions that have impacted the disability community. However, you can read more about her positions here.
For a great overview of the candidates running for president in 2020, including a list of each of their platforms, feel free to visit #CripTheVote’s blog on the 2020 presidential candidates.
GEORGIA-BASED RACES TO WATCH
For the past few decades, Georgia has been considered a solidly Republican state; however, over the last few years, Georgia has started to poll toward the middle of the political spectrum, which has created increased interest and investment in our U.S. Senate and House of Representatives races. In this section, we review key federal races to watch in Georgia.
In one race, we have incumbent Senator David Perdue (R) running against challenger Jon Ossoff (D). Both are likely familiar names, as Perdue has served in the U.S. Senate since 2015, and Ossoff ran for Georgia’s 6th congressional district during the 2017 special election, which was one of the most expensive House races in the country.
Although neither have a specific disability platform, you can find out more information about their stances, including Perdue’s voting history below:
Our second U.S. Senate race can be a bit confusing, as it is not happening during the typical election timeline for that specific seat. After Sen. Johnny Isakson announced his early retirement, Governor Brian Kemp appointed Sen. Kelly Loeffler to hold that seat until the upcoming election on Nov. 3. This specific election did not have a primary election prior to the general election, which typically serves to narrow down the field of candidates running.
The reason this election is called a “jungle primary” is because all candidates could run for the same office, regardless of political party. As such, we find ourselves with multiple candidates from the Republican and Democratic parties running for the seat. In order to secure a victory, the top candidate must receive a majority of the vote. In the real likelihood that no single candidate receives a majority of the vote, the top two candidates will compete in a runoff election in January 2021.
Here is a breakdown of all those candidates, separated by party. Of note, no candidate in this race has created a disability-specific platform.
Please click on each candidate’s name to be taken to their “Issues” webpage to learn more about each candidate’s positions.
Please click on each candidate’s name to be taken to their “Issues” webpage to learn more about each candidate’s positions. As Ed Tarver was a former US Attorney, Southern District of GA, click on Ballotpedia for info as well.
For decades, Georgia’s 6th district for the U.S. House of Representatives has been a solid Republican seat whose winners – Newt Gingrich, Johnny Isakson and Tom Price – became major figures in the Republican Party. Georgia has slowly shown more diversity within its elections, which is why the 6th district is on our hot list of races to watch. The two candidates for the current 2020 election include:
Georgia’s 5th congressional district was represented by the late congressman John Lewis since 1987. For the first time in over 30 years, this district will now be represented by someone new, so we included it in our list of races to watch. Lewis originally won the 2020 Democratic primary race for the seat before his unexpected passing. Georgia’s Democratic Party then selected state Senator Nikema Williams to serve as the Democratic candidate on the ballot. The two candidates include:
Don’t forget that local seats matter too! With the federal election coming up we must not forget an important fact: local senators and representatives are also up for election. Georgia has 56 state senators and 180 state representatives, and they are ALL up for election.
Visit Open States online to find out which state senate and house district you live in, and the current state legislators who represent you. You can even see the committees the legislators serve on and the bills they have sponsored. Visit Ballotpedia to learn more about the election history of your state-level districts and whether or not your current legislator has a general election challenger.
* It is important to note that GCDD does not endorse any candidate and that the enclosed information encompasses only a small piece of a larger political platform for each candidate. We encourage you reach out to them with questions of your own – and to vote.
by Alyssa Lee, PsyD, GCDD Public Policy Research & Development Director and Charlie Miller, GCDD Legislative Advocacy Director
PUBLIC POLICY FOR THE PEOPLE: What to Know At The Polls
There’s a lot of information out there. Here’s how to make sure you’re prepared to make your vote count.Cheri Mitchell is a member of the HAVA (Help America Vote Act) Team at the Georgia Advocacy Office (GAO). Here are some of the most common issues she sees voters with disabilities have on election day, as well as how to navigate them.
WHERE DO I GO TO VOTE? Voters can find their polling place online at the Georgia Secretary of State (SOS)’s website: mvp.sos.ga.gov. The SOS also has a smartphone app available.
WILL THE POLLING PLACE BE ACCESSIBLE TO ME? By law, all polling places should be accessible. The Secretary of State will be providing “readers” to those who need them for the paper ballot printed at the end of a voter’s session. If you would like to familiarize yourself ahead of time with Georgia’s new voting machine, watch Georgia Public Broadcasting’s video here.
WHAT ARE MY RIGHTS AS A VOTER? “Under the Help America Vote Act, voters with disabilities are entitled to the same opportunities for both access and participation as all other voters,” Mitchell says. “Additionally, Title II of the Americans with Disabilities Act requires that governments provide people with disabilities a full and equal opportunity to vote.”
The Georgia Advocacy Office will also release a survey in November following the election for voters with disabilities who experienced issues voting in the election. If you would like to receive a survey, contact Mitchell by email at or call the GAO office at 404-885-1234.
IS TRANSPORTATION AVAILABLE?
You have a few options for getting to the polls. Uber and Lyft often offer discounts for rides, and if you have a MARTA Mobility Breeze Card, you may be able to make a reservation for a ride to your polling location.
Mitchell says there are multiple organizations that may be able to assist voters with transportation: “The Georgia Democrats Voter Protection Line (888-730-5816) has provided free rides to the polls, and the Republican Party of Georgia may also be able to assist (404-257-5559). You may also try the League of Women Voters (404-522-4598).”
Voters unable to get to their polling place may request a mail-in ballot and vote from home. “The ballot must be received by your county registrar by the time the polls close for voting,” Mitchell says. You can request a mail-in ballot anytime between 180 days before the election to the Friday before the election (Oct. 30).
AM I ALLOWED AN ASSISTANT INSIDE THE POLLING PLACE?
The Voting Rights Act of 1965 allows voters to bring someone with them to assist them with voting. In a federal election, this can be anyone except an employer, a representative of your employer, or a representative of your union, if you belong to one. Poll workers and watchers who are residents of your precinct are not allowed to help.
WHAT ELSE SHOULD I KNOW?
If you run into any issues while voting, ask for a provisional ballot. You have 48 hours to resolve the issue, and you can see the status of your provisional ballot through the SOS app or website. Mitchell says to vote early in the day if you can. “In Georgia, voters with disabilities do not have to wait in line at a polling place if they arrive between 9:30 AM and 4:30 PM,” she says.
Your vote counts. Take your time and ask for help if you need it.
GAO’s Voter Protection Hotline:
From now through election day, voters with disability-related issues can call GAO at:
(404) 885-1234 or (800) 537-2329
Having trouble registering to vote, requesting an absentee ballot, accessing early voting, etc.? Leave a message and someone will contact you within two business days!
Check in with a poll worker.
Provide a valid photo ID, which the poll worker will scan to verify that your voter registration information is correct.
Sign the Elector Oath.
The poll worker will then load your ballot onto a voter access card and hand it to you.
Place the voter access card into the voting machine.
The ballot will appear on the screen and you will make your selections.
Accessible options are located in the top right corner of the screen:
High contrast view
Sip and puff technology for the physically impaired
Select your candidates by touching the screen.
If you would like to change your choice, touch that candidate again and the screen will clear.
You can review your choices when you are done selecting.
Print and review your ballot.
Insert the ballot into the scanner, which will confirm that your vote has been cast.
PUBLIC POLICY FOR THE PEOPLE: 2020 Legislative Session Recap
by Charlie Miller, GCDD Legislative Advocacy Director
This has been one of the most interesting legislative sessions we have seen in modern times. Between Governor Brian Kemp’s first installment of recommended budget cuts and the threat of COVID-19, the Georgia Council on Developmental Disabilities (GCDD) has been responding through strong advocacy that empowers our community.
As you may know, this year’s session got cut short due to the spread of the coronavirus and also because of the pause in session for budget negotiations. When the session began, we already knew the governor’s recommended budget cuts were coming, as all state agencies and state-funded entities were asked to cut their spending.
From Medicaid waiver funding, to organ transplants for people with disabilities, to employment, many things were at risk for the disability community. But Georgia’s disability advocates were strong and spoke with one voice.
Here at GCDD, we believe in public policies that aim to advance the well-being of all Georgians with developmental disabilities, their families and all who love them. We do this by supporting and advancing policies that create and maintain true community inclusion.
Below we list each of GCDD’s 2020 Advocacy Days, as well as various legislative highlights, under five different sections: state budget, health and wellness, employment, education and transportation.
Coming into this legislative session, we anticipated several interesting budgetary developments. Governor Kemp outlined in his State of the State address in January 2020 that he was looking to cut all state agencies’ budgets by four percent this year and six percent next year in order to accommodate a pay raise for teachers, which would cost the state $350 million.
After reviewing the governor’s recommendations, GCDD was surprised to see they included no new waivers for home and community-based services (HCBS). This greatly impacts the disability community because, over the last 10 years, the governor’s office has always recommended funding for new waivers – often as many as 125 slots per year.
In response, GCDD organized an Advocacy Day focused on HCBS funding. As part of that initiative, the Council recommended at least 100 new waivers be added to this year’s budget to address the 6,000+ person waiting list in Georgia. We know these waivers are vital to helping people with disabilities live in their own communities and have real jobs and get the support they need to lead fulfilling lives. GCDD also worked with advocates around the state to prepare legislative testimony.
As a result, advocates educated and informed their lawmakers to include 100 new waivers in the House budget. And we are looking forward to advocating for more as soon as the session resumes and ensuring the budget improvements make it through the Senate!
HEALTH & WELLNESS
Prior to 2020, Georgians with disabilities could be organ donors, but hospitals and donation organizations were legally able to deny people with disabilities the right to receive an organ transplant, based solely on that person’s disability.
Spearheaded by the Nobles family from White County, Gracie’s Law is named after David and Erin Nobles’ daughter and would eradicate legal organ transplant discrimination based on disability status. Together GCDD, The Arc Georgia and the Down Syndrome Association of Atlanta worked alongside advocates across the state to educate legislators about this important issue. In fact, GCDD’s first 2020 Advocacy Day focused on organ transplant discrimination and Gracie’s Law, also known as House Bill 842.
Gracie’s Law was introduced in the Georgia State House of Representatives by Rep. Rick Williams, who serves as the Nobles’ representative. The bill flew through the House with a unanimous vote of 160-0. The last day of session, before COVID-19 mandated a break in the legislature, Gracie’s Law was assigned to the Health and Human Services Committee in the Georgia State Senate and is waiting to be called for a vote. We are waiting for the session to reconvene so we can pass it out of the Senate and to the governor’s office.
For the past few years, Georgia has been considered one of the top states in which to do business. But sadly, the disability community in Georgia has been left out of the prosperity these businesses promise our state. While people without disabilities are employed at a rate of 73%, Georgians with disabilities are only employed at a rate of 34%. This means that while the majority of people with disabilities report that they want to work, unemployment for people with disabilities hovers between 65% and 70% nationally.1
The disability community has been garnering support from both the House and Senate around this issue, as we believe all people with disabilities have the right to go to work and get paid competitively. To further this support, one of our 2020 Advocacy Days was centered around creating a resolution in the House to put pressure on the Employment First Council, which was formed when Employment First officially became law in 2018. This entity is supposed to help guide the General Assembly on how to ensure Georgia becomes a state that truly implements “employment first” practices, including funding employment supports before and instead of segregated services.
The resolution would compel the Employment First Council to fulfill its mandate and hold public hearings that inform recommendations to the General Assembly regarding how to implement best practices, including how to eliminate the use of subminimum wages across the state. As of now, the plan for a resolution is on hold as the session has yet to reconvene.
On the education front, the governor’s proposed cuts impacted the budget allocation for inclusive post-secondary education (IPSE) programs in Georgia. Since some funding for IPSE is allocated as a line item in the state budget, it is subject to the governor’s budget cuts this year and next.
To address these concerns, GCDD worked with the Office of Planning and Budget to find a way to cover the cut this time. But legislators need to understand how impactful IPSE is to the disability community. To help show the impact to legislators, students, staff and supporters from all nine IPSE programs in Georgia joined GCDD at its IPSE Advocacy Day. Over 150 students, parents, professors and community advocates came to the Capitol to educate and inform lawmakers about the importance of post-secondary education for students with disabilities.
In addition to IPSE, Senate Bill 386 was introduced – but not without some concerning issues. This bill would expand the Special Needs Scholarship, which allows students to transfer to a private school in hopes that school can provide different supports. Specifically, it would expand access to the Special Needs Scholarship to students who have a 504 plan. A 504 plan is a plan developed to ensure that a student who has a disability is receiving the right supports and services needed to make them successful in school.
GCDD was concerned about certain aspects of the bill, namely the rights parents and students using the scholarship would be asked to relinquish. Families using the scholarship would lose their rights, provided under Section 504 of the Federal Rehabilitation Act. These rights serve to protect against discrimination against a student with a disability. Essentially, this would allow discrimination and bullying based on disability.
The bill was voted favorably out of committee and passed in the Senate with a vote of 33-22. The Senate made some changes to the bill but did not correct the concerning language about relinquishment of rights. Fortunately, GCDD remained in close communication with the bill author and sponsors, who assured us that changes would be made to the bill while in the House. With the suspension of the session, no legislation can be voted into law until our senators and representatives return after the pandemic.
Just like all people, Georgians with disabilities use many different modes of transportation – from planes to trains to automobiles. In addition to these common modes of transportation, there are several other mechanisms that provide mobility, like elevators, that many of us may take for granted. Unfortunately, elevators are often broken, closed for repairs or otherwise inoperable, especially in high-use areas like public transit stations.
According to the laws in Georgia, all elevators should be inspected every six months. But a new bill coming out of the Senate is looking to change that. Senate Bill 377, authored by Senator Burt Jones from Jackson, GA, aims to change mandatory elevator inspections to only every 12 months. GCDD researched other states and found that many states only inspect elevators every 12 months.
However, we wanted to use this opportunity to make necessary improvements to the way our elevators are maintained in Georgia. We know that many of our advocates rely on elevators to get around, and we also know firsthand how frustrating broken elevators can be. We worked with members of the state Senate to include language that organizations can be fined if their elevators break often.
Although the session is currently suspended due to COVID-19, the public policy department at GCDD is working around the clock to make sure that the needs of our community are identified and addressed. We are actively monitoring any news regarding when the session might restart and will make sure you all are in-the-know!
GCDD is standing by for the state legislature to reconvene for a special session, as is mandated by Georgia’s state constitution.
In the meantime, advocates can continue meeting with their legislators in their communities – especially since this is an election year. Policymakers should hear from the people they serve as frequently as possible. You don’t need the legislature to be in session to advocate, so now is the time to write to, speak with and meet your elected officials about the issues important to you.
1Winsor, J., Timmons, J., Butterworth, J., Migliore, A., Domin, D., Zalewska, A., & Shepard, J. (2018). StateData: The national report on employment services and outcomes.
The Disability Vote Counts 2020 – It’s Election Season!
It’s election season again! In November, millions of Americans will head to the polls to vote in the 2020 Presidential and General Election taking place on November 3. Like all elections this year’s is important, and it is even more important for people with disabilities to head to the polls to make their voices heard.
In a primary election, registered voters may participate in choosing the candidate for the party's nomination by voting through secret ballot, as in a general election.
Due to the COVID-19 outbreak, the Georgia primary was postponed to June 9, 2020. With many shelter-in-place orders in effect, Secretary of State Brad Raffensperger announced that all ballots will be mailed to registered voters.
While early voting was already underway, the primary election will feature the presidential candidates and the local and legislative primary races. The early voting for the June 9 primary will begin on May 18, 2020.
The candidates who are selected by voters will be on the ballot for the November General Election.
Find out who is seeking election/re-election in Georgia.
Who is up for election?
14 Georgia representatives in the US House of Representatives
2 Senators in the US Senate
Also, many state senators and representatives, commissioners, judges, councilpersons and other regional and local seats impact how people with disabilities work, live and play in their communities.
MAKE YOUR VOTE COUNT
Did You . . . move, change your name or have any changes in the last one year? Make sure your information is up-to-date and current on the Secretary of State’s website.
REGISTER TO VOTE BY MAY 11 to vote in the rescheduled June 9 primary. All ballots will be mailed to registered voters due to COVID-19
Dates to Remember
May 11 – Deadline to register to vote in June 9 Primary
May 18 – Early voting begins
June 9 – Presidential Preference Primary, General Primary Election, Nonpartisan General Election and Special Election
October 5 – Deadline to register to vote in November General Election
November 3 – General Election
Dates subject to change due to COVID-19
The Accessibility of the New Voting Machines
by Mary Welch
From the initial fact-finding process to the end result, leaders in the disability community are giving a big thumbs-down to the new Georgia voting booths as election season is here. While the Georgia primary election has been rescheduled to June 9 due to the COVID-19 outbreak; and the Secretary of State (SOS) will be mailing absentee ballots to all registered voters for the primary; the accessibility of the new machines will be an important factor in the general elections.
Not having the best, most accessible machines creates problems.
“There could be an effect on the actual vote count if votes are unconfirmed, or worse, inaccurate,” says Cheri Mitchell, an advocate for the Georgia Advocacy Office. “Aside from the impact on votes, however, voters with disabilities may start staying home instead of voting.”
Not only will their votes be marginalized or excluded, Georgia could slip further behind in terms of accessibility, threatening the participation of voters with disabilities in the future.
“There is no single definition of voter suppression, per se, but we can extrapolate the meaning of the term by looking at examples such as voter roll purges, ID requirements, restricting access to absentee voting and voter registration restrictions,” adds Mitchell.
All of these examples have the effect of making voting more difficult, and Georgia’s new voting machines will certainly do that for some. It may be unclear what the intention was in selecting the specific machines or not including certain accessibility features that would make the machines useable by all voters. Regardless, the impact is the same: the new machines will make it more difficult for people with disabilities to vote in Georgia.
The voting machines of yesteryear were challenging. “There had to be a better way,” said Robert Smith, president of the Decatur chapter of the National Federation for the Blind (NFB).
“The SOS’ office has a legitimate interest in making sure that the voting machines are secure, and protecting that interest means that Georgia is using these new machines. However, disability rights are no less important than voting security, and we have to be careful to avoid assuming that we can’t have both. We can and we must,” says Mitchell.
Voters with motor impairments or significant vision impairments are unlikely to be able to use the new voting machines independently.
Then-SOS Cathy Cox agreed and ordered new machines that were more sensitive to the needs of people with disabilities. “When Cathy Cox was in office, the blind said that we wanted to have a say, and we did,” said Smith.
Still there were issues, mostly over validation and technology. Governor Brian Kemp wanted new machines. “The office has made a big effort to try to make the voting as accessible as possible to people with any disability and have the voting be the same as everyone else,” says Walter Jones, communications manager for the SOS. “We went through a whole process and even had roundtable discussions with various disability organizations.”
At that meeting were senior members of current SOS Brad Raffensperger’s staff, including State Elections Director Chris Harvey, who said his mother also was a person with disabilities. “This is personal for me that we get out and serve people with differing abilities,” he said.
One of the sticking points is that Raffensperger brought them much later into the decision-making than Cox.
“We recommended the machines that Maryland uses, and they didn’t choose those,” says Dorothy Griffin, president of the NFB in Georgia. “It’s not an improvement. I liked the older machines better.”
Instructions on using the new machines are “very clear,” but Jimmy Peterson, executive director of the Georgia Center of the Deaf and Hard of Hearing, added that he wished, “all the amendments were in the [American Sign Language] version instead of the English version.” The new machines are almost the same as the old, except to print the ballot to vote.
So, what’s the problem?
A big negative is check-in privacy. Poll workers can scan identification cards, but not a person’s party affiliation, so it must be given to the worker. “That’s not privacy,” says Griffin.
Technology is another issue. “Using the headset is a bit confusing, and it repeats the instructions over and over again. It drives you a little batty,” says Griffin. Many, especially seniors, may not be comfortable with technology. Those with poor hand coordination could also be impacted, she adds.
Smith also questions whether poll workers might not be properly trained. “Is there enough training so the poll workers will know what to do right away if a person who is blind or visually impaired comes in?”
Jones says there is training as well as a video helping poll workers respect and aid people with disabilities.
There also are issues with validation. With the new system, a person will be given a paper copy of their ballot to ensure that it is correct and submitted. Of course, for anyone who can’t see, being given a piece of paper to read is a wasted effort. Bringing smartphones, other artificial intelligence devices or magnifying glasses are a “Band-Aid,” says Gaylon Tootle, an independent living advocate and vice president of the NFB in Augusta.
Both Griffin and Smith want a scanner that, when you insert the ballot, will verbally read the vote so the person can approve. Smith says the state claims scanners are too expensive. “If I can’t read my ballot, a scanner is the next best thing. It puts us on equal footing. I want a paper trail as well as it being electronically recorded.”
By law, no one is allowed to bring smartphones with them into the voting booth. However, the voter election board held hearings to change that regulation.
In response, the SOS’ office will now allow voters with disabilities to verify their printed ballots before casting them. The system allows voters to make their choices on a touchscreen device and then print their ballot for review before casting.
According to a press release from the SOS’ website, “the new system has the ability to adapt to various accessibility needs, from larger type fonts and altered contrast to audio instructions and sip-and-puff manipulation.”
It is every citizen’s right to vote.
“The people who are elected make decisions about equality, programs and services. We need equality, programs and services for all! That means ALL need to vote,” said Mitchell. “Not only is it every person’s right to vote, every person has the right to vote privately in Georgia. If you are a person with a disability, your ability to read, mark or submit your ballot independently may be impacted. Accommodations like assistive technology (AT) devices are the only way that you can vote in private, just like everyone else.
Smith acknowledges the cost, “but we pay taxes.” Adding, “We’re going to keep pursuing it until it gets changed. We’re encouraging all people, especially in the blind community, to get out to vote.”
If a person with a disability had trouble voting or was not treated properly, they can contact the Georgia Advocacy Office (GAO), which receives federal funding under the Help America Vote Act (HAVA) to advocate to ensure that people with disabilities have access to the voting process.
The GAO voting hotline on Election Day in November will be open: 7am to 7pm.
The phone number is 404-885-1234 or 1-800-537-2329.
There is also a complaint process on the Secretary of State’s website.
Using Georgia’s New Voting Machines
CHECK IN AT THE POLLS. Upon verifying their eligibility status, voters receive a smartcard to begin the process.
MARK & PRINT YOUR PAPER BALLOT. A universal ballot marking device with accessible options, prints a paper ballot after voters mark and confirm their selections.
PLACE YOUR COMPLETED BALLOT INTO THE SCANNER FOR COUNTING. All paper ballots go into a secure lock box.
GCDD Hosts Record-Breaking Advocacy Days
Over 650 disability advocates registered to attend the 2020 GCDD Advocacy Days at the Georgia State Capitol – making it the biggest series the DD Council has hosted since inception of the initiative.
Hosted by the Georgia Council on Developmental Disabilities (GCDD) in January, February and March, advocates met with their legislators to discuss the issues important to the disability community in Georgia.
Four different Advocacy Days focused on policies affecting people with disabilities and brought together advocates from across the state to speak with their elected officials. Topics included Gracie’s Law, inclusive post-secondary education, home and community-based services and competitive, integrated employment. In addition to these four events, GCDD planned a fifth Advocacy Day to focus on the school-to-prison pipeline. Unfortunately, the final event was canceled due to the COVID-19 pandemic that hit the United States in early March.
“All of our advocates – whether a self-advocate, a family member or a caregiver – were empowered to connect with their legislators to inform and educate them about issues that matter to them,” said Eric Jacobson, executive director of GCDD. “It was motivating to see advocacy in action and be at the forefront of positive change for people with developmental disabilities across Georgia.”
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.
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
PUBLIC POLICY FOR THE PEOPLE: Official 2020 Legislative Recap
by Alyssa Lee, PsyD, GCDD Public Policy Research & Development Director
Welcome to our official 2020 legislative recap. This session can only be described as a roller coaster, with plenty of highs and lows. For starters, no one could have predicted we would not have a recap for you all until July! Although our state session typically ends in April, it did not end until June 26 this year because of the pause that was required due to the COVID-19 pandemic. Please read and/or listen to our previous recap of all that took place this session before we had to suspend activity.
When session officially resumed on June 15, we knew time was limited to get high-level legislation passed. There were only 11 days left to pass the fiscal year 2021 budget, which is required prior to its July 1 start date. When the session resumed, Governor Brian Kemp was proposing all state agencies rethink their budgets and provide 14% cuts instead of the 6% cuts that were proposed in the fall of 2019. You read that right. State officials had 11 days to pass a brand-new budget with deep cuts to all areas of services!
And not only did the budget have to pass, renewed pressure to pass a hate crimes bill had resurfaced after the killing of Ahmaud Arbery and the resulting protests after the murder of George Floyd. Georgia was one of the only states in the nation without a hate crimes law, having had previously passed a hate crimes law that was struck down by the Georgia Supreme Court for being too vague. The Georgia House passed new hate crimes legislation during the 2019 legislative session, but the bill was sitting in a Senate committee with no signs of moving. The passage of this legislation quickly became top priority.
BUDGET AND REVENUE
During the 11 days of session in June, we asked a great deal of our advocates, calling on you to advocate virtually through emails, calls and virtual visits with members of our General Assembly. Now that the budget has been officially signed by Governor Kemp (HB 793), we can say that our advocacy efforts paid off. Our biggest win came in the 100 new NOW/COMP waiver slots that were added to the budget. You all might remember that this was the first year since the creation of the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) that the governor recommended no new waiver slots be included in the budget. We spent months advocating in January and February and were happy to see that 100 new slots were included in the House version of the budget. And then COVID-19 came along, which resulted in huge revenue losses in the state. New budget proposals were introduced, and again, there were no new waiver slots proposed. We had our work cut out for us because many services were being cut, and it was a long shot to think we could get services added during this time. But that is exactly what we did! We called, emailed, visited and were rewarded with 100 new slots. That totals over $5 million dollars in new services for people with developmental disabilities. Y’all, that is the power of advocacy!
Not only were we able to secure new waiver slots, we also were successful in preventing the total elimination of the family support program. When DBHDD presented their budget proposal with 14% cuts, the family supports program was completely eliminated. We were able to get most of that program reinstated in the budget and limited the cuts to 35% of the program. We recognize that these cuts will negatively affect families in Georgia, and we are prepared to advocate for full reinstatement of funds during the upcoming session.
Our other primary advocacy push focused on increasing our state’s tobacco tax. We saw this as an opportunity to bring additional revenue to our state, and more money means more services. Our current tobacco tax is one of the lowest in the nation, and our legislators had an opportunity to raise millions of dollars to offset the budget cuts. Unfortunately, the tobacco tax increase stalled in the House and was not passed. We still have work to do to make sure our representatives understand our position on the tobacco tax. We will continue to push for this increase.
During the final 11 days, we had two main bills signed by the Governor that will positively impact the disability community, HB 426 and HB 987. The first is the hate crimes legislation, which revises the criteria for punishment for crimes involving bias or prejudice and includes people with disabilities as a protected group. The second is a bill to increase protections for residents in assisted living facilities and larger personal care homes.
Unfortunately, with COVID-19 changing the course of the 2020 session, and many high-priority bills in the Senate Health and Human Services Committee (which is where Gracie’s Law landed), we simply did not have the right set of circumstances on our side to get Gracie’s Law over the finish line. We know that you all worked hard to get this introduced and passed in the House, and we have no doubt that our advocacy efforts will be just as strong in 2021 to get Gracie’s Law passed and signed into law in Georgia!
This session was one for the record books, and we couldn’t be prouder of Georgia’s advocates. Thank you for all of your hard work. We can’t wait to advocate alongside you during the 2021 session!
ADA 30: Celebrating the Americans with Disabilities Act
Georgia Council on Developmental Disabilities (GCDD) Legislative Advocacy Director Charlie Miller interviewed Mark Johnson, renowned disability advocate and former director of advocacy at the Shepherd Center, on what it was like to advocate for the Americans with Disabilities Act, what the future holds and his advice for young advocates.
Charlie Miller: What was your biggest “I can’t believe I lived without this” moment once the ADA got passed?
Mark Johnson: Well, I got injured in 1971 and then, I got involved in Section 504 of the Rehabilitation Act in the late ‘70s, but none of them addressed or were as broad as the ADA. So back in those days when – I drive a modified or accessible van – you didn’t really have building codes that addressed access so there were a lot of physical barriers. You weren’t able to use public transit. There were just a lot of issues. You weren’t able to go down to Tybee Island and get on Beach Manning. You weren’t able to access power beach chairs in Orange Beach, Alabama, or Destin, [Florida]. You weren’t able to do all those things so you kind of did what you could do. So, I think the “aha” moment was when I was sitting on the White House lawn on July 26, 1990 with 3,000 other people in very hot weather.
You finally kind of got acknowledged as a person, you know? Not somebody to be treated differently or be discriminated against. It was like after all those years where people with disabilities were separated, isolated and discriminated against – it was like, okay change takes time, but now we have a new tool in the toolkit and that’s the ADA. So that one thing was just seeing that many people with that much history and understanding had started a new narrative.
Charlie Miller: I think it’s really important for us to highlight that, like you were saying, the ADA is there. But there are other laws and other things like the Olmstead decision that has really impacted our community.
Mark Johnson: And think about that. [The Olmstead decision] didn’t come along till like nine years after ADA.
Well, I once had this theory, and I think I’ve told it to you before: “if common sense worked, we wouldn’t need laws.” So unfortunately, we had to pass the law, but sometimes they don’t go far enough. People who study history realized that the law itself should have been enough in 1990, but we had to go and sue the state of Georgia to enforce [the ADA] nine years later. And, if you look at the enforcement or implementation of Olmstead in places like Georgia, the home of Olmstead, we still have a long way to go. So here we are: 30 years after the law, 30 years after the Supreme Court decision, and there is still a waiting list. What’s wrong with this picture?
Charlie Miller: Well, I think that brings me to my second question. You’ve seen ADA, you’ve seen Olmstead, you’ve seen the Rehab Act – all really instrumental laws and regulations to help people with disabilities. I was listening to one of Kate Gainers’ interviews and she was saying that she does not envy the younger generation because she sees so many new barriers coming up. It may not be a physical barrier, but it may be a new barrier. In your own knowledge, what do you think will be the next big barrier for the disability community?
Mark Johnson: You still obviously have employment, underemployment. That one hasn’t gone away and it really hasn’t changed much since ADA passed. We still don’t have equal access to healthcare and look what’s happened with the pandemic. We still have a variety of systemic issues whether race injustices or whatever that needs to be addressed. So, you can look even within the disability community and say, “Okay, who tends to be forced into facilities and who tends to be not employed and who tends to have lack of housing?” And, you break that down demographic even more.
And then, we have the same old issues. Just because we say ADA required accessible buses in public systems, then you had to work with over the road coaches, and then you had to work with travel companies. Now you go, “Okay, can I go out to the local RV dealership and find an accessible RV?” When I rent a car or rent a van from a rental company, I have to go to a niche or specialty van company and pay a bunch more than I would have to pay if I would just rent it as a van from a rental company. If you look at Uber or Lyft, we don’t have the same level of access to those transportation modes as other people. I could go on. You asked me for one or two or three and I gave you eight or 10 really quick.
Charlie Miller: I totally agree with that. And I think you’re right. We’ve started a really good opportunity; we have really good laws behind us. And, now we’ve just got to make sure – to get the community to be involved to want to make it as accessible as possible because they see the value in making stuff accessible.
Mark Johnson: Well you’ve always been good with people. You know. It’s easy for you to establish relationships with people. You’re not one to sit inside and not come in contact with people. When it’s all said and done the answer is relationships. You surprised your family; you surprised your family’s friends. I would think they’re probably looking at access differently now that you’re a young man than they did when you were that kid who uses a wheelchair. “We’ll get him in,” versus now they’re asking, “Can he roll in?” Can he use my bathroom?” Maybe we don’t need to just drag him here or carry him there, but maybe we actually need to accommodate his disability. All of that changes with relationships and attitudes. When you get an attitude change, you get policy change.
Charlie Miller: So, our final question – and it’s an open-ended question. You’re welcome to spend as long as you want on it. Imagine you’re talking to a young advocate named Charlie. What is one piece of advice you would want to leave to that next generation to give them an understanding of what they are going to have to do and then what do you see as the next big push?
Mark Johnson: At the end of last year, some of us were having a talk about what 2020 might look like. What are the opportunities for 2020, and of course, we were talking about more around this November? What would different outcomes look like? How would people respond based on who gets elected – not just as President but down-ticket? We said it’s going to be one of those transformative years, but that was before we had the pandemic or before we even had some of the recent protests. And, that was before Gen Z recognized that they’re 10% of the voting population. I’m a Baby Boomer, then you’ve got your Millennials and Gen X, but Gen Z has woken up now and said, “Hey, we potentially control 10% of voters.” It is an opportunity. We’re learning things and we’re not going back.
So, it’s like that old Nike saying, “Just do it.” And then it’s like, just do it now. Understand that your personal experience makes you an expert. Nobody’s going to teach you that, and you don’t have to learn that first. Just know that your personal experience makes you an expert, so just go out and be an expert.
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.
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.
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 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.
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
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.
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
To read more in Making a Difference magazine, see below: