Summer 2023

Kelvin, who has an intellectual disability, is able to dedicate time to these passions because he lives independently in his own apartment, with staff who come several times a week to help with his medications, errands, and other tasks. Kelvin’s budget is tight, but he loves to find deals at thrift stores on the furniture and décor that he loves. He explains that his tastes run to “more antique-like things,” which is clear everywhere in his home from the classic sleigh-bed frame to the vintage 1980s crock pot that has its place in a neat line in the kitchen, alongside the air fryer, the Instant Pot, and the non-vintage crock pot.

These appliances are more than a convenience for Kelvin; they make it safer for him to cook meals independently in his home. For one thing, he says, the timers on these devices make it impossible for him to walk away from his cooking for too long and risk a fire. And another: Conventional ovens make kitchens quite warm. “And if I get too hot,” he explains, “I will get a seizure. And I know the old saying goes, ‘If you can’t stand the heat, get out of the kitchen!’” His laughter is infectious. Kelvin’s flair for interior decorating is a family trait. “Oh, yeah. I’ve always enjoyed decorating, ever since I was coming up as a child.” He has a sister who is much older and remembers admiring the look of her house when he was growing up. And then there was his mother.

“My mother always said, ‘Ooh, I’ve got to put this sofa over here and move this loveseat over there.” She was a busy woman, though, and didn’t always have time to follow through on her redecorating desires—and so one time, when she wasn’t home, he moved the furniture for her. He beams now to recall her expression when she saw her living room looking exactly the way she’d wanted. The lesson of that story? “Surprise your mama, and she’ll be proud of you!”

The loss of his mother two decades ago left Kelvin completely bereft. “I felt so all alone. And that’s when I really got closer to God.” These days, Kelvin attends church weekly, listens to his favorite minister preach on the radio, and finds solace in his prayer room, whose wall hangings inspire him. He says his family doesn’t get together much anymore except for funerals; it’s church that sustains him and keeps him connected to a source of love and community.

Kelvin’s sense of style extends to personal fashion, too: He keeps a neatly stacked collection of trilby hats in a broad range of colors, from purple—his favorite (“That’s a royal color, and that’s the color Jesus’s robe was!”), to grey houndstooth (“I’m looking for a matching suit for this one!”), to bright red (On Valentine’s Day, he wears all red and laughingly tells people to call him “the love doctor.”)

Sometimes, he gets frustrated. It often happens when his fierce desire to shape his own environment meets the constraints of life as someone living on a fixed budget, as he does. For example, in his love of comparison shopping, he sometimes feels condescended to by aides who tell him that certain items are outside of his price range. Or, as he puts it, “I like to take my time and make my own decisions. I don’t need someone telling me, ‘You don’t need to get that!’ like a parent tells a child.” Living with a disability means Kelvin needs help with some activities of daily living. But he’s also a 46-year-old man with his own passions, goals, and natural desire for personal agency.

A few years ago, that sense of agency led him here. He grew up in a housing project in a part of town he says is best known for occasional shootings. “That environment I was in, I got tired of that area,” he says—especially as younger friends began leaving and the elders who had checked in on him and had been his friends began passing away. “I thought, ‘The energy I need is not around here anymore.’ I needed to move!’” Funds from his Medicaid waiver made it possible for his caseworkers to find his current light-filled apartment in another neighborhood—which he says has made all the difference. “When God placed me in this area, I felt more upgraded.”

In some ways, Kelvin Carter’s life has been a series of upgrades, made possible largely through the Medicaid waiver which allows him to live outside of an institution. Environment matters to all of us, whether that means living in places free of crime, near the people we care about, or filled with the furniture we’ve picked out ourselves with our collections of favorite hats near at hand in a neat stack. Maybe, in some ways, that’s what finding home is all about: a series of upgrades.

There’s more that he wants to do: He says he’s been lobbying for a storm door so that he could let more light in his entryway. There’s a recliner he’s had his eye on for weeks—and somewhere, who knows where, in the future, there’s that houndstooth suit that matches his hat. But for now, he’s going to go back upstairs, put on another hat, his blue hat and walk out into the sun. When people ask him why he’s wearing a bright blue hat, he’ll say, “Don’t you see how good that blue sky looks up there? God gave me a blue sky today!” 

Photos by Jessica Whitley

The impact greatly affected students with disabilities and their families. With the shift from in-person learning to remote learning, many students faced challenges accessing the accommodations and support they needed to succeed in their studies. Additionally, the closure of schools and universities had led to a lack of social interaction and community for students with disabilities, which had negative effects on their mental health. 

The pandemic has highlighted the need for more inclusive and accessible education, as well as the importance of providing resources and support for students with disabilities during times of crisis.

In a report titled Education in a Pandemic: The Disparate Impacts of COVID-19 on America’s Students released from the U.S. Department of Education, Office for Civil Rights, observations highlighted the significant disruption of education and related aids and services needed to support students with disabilities and their academic progress and prevent regression. 

The report also highlights signs that those disruptions may be exacerbating longstanding disability-based disparities in academic achievement.

Wina Low, State Director, Special Education Services and Supports at the Georgia Department of Education (Ga DOE) shares what the department has learned in these past few years. 

Low’s office is responsible for ensuring that children with disabilities are appropriately provided services and supports, and their family's rights are protected as well. A large component of the office’s work requires compliance, where it monitors programs at 224 local education agencies which includes charter schools. 

“In the very early weeks [of the pandemic], there were a lot of different things being done by school districts to try to continue to maintain education,” says Low. “They quickly pivoted to online instruction, but our students with disabilities have such a wide gamut. We have many different eligibility categories and many different levels of and needs for service.”

While the research available is limited, a 2021 report from the Center on Reinventing Public Education (CRPE) and the Center for Learner Equity titled How Has the Pandemic Affected Students with Disabilities? states the following:

Early evidence suggests widespread and lengthy interruptions in students’ specialized services essentially disappeared overnight at the outset of the pandemic. Anecdotal reports suggest that many students who typically receive more extensive supports and services regressed during long months at home. Those with less-intensive needs made some progress but lagged that of their neurotypical peers in both engagement and academic growth. 

Low adds, “While everyone went online, it was clear that the medium of delivery was not the best for students with some of the more significant disabilities. Many needed to have in person instruction. And that was, of course, a health concern to do that as well, but, they still tried to do the best they could with online instruction. Of course, in most cases, a parent was also there to help facilitate on the other end to guide through that.”

A New Frontier Creates a New Barrier

Online instruction also introduced a new barrier: the digital divide. 

Digital divide is defined as “the economic, educational, and social inequalities between those who have computers and online access and those who do not,” according to Merriam-Webster.

The Individuals with Disabilities Education Act (IDEA) requires that special education services are provided to public school students across the country. Despite this, the pandemic disrupted student access to the specialized instruction, interventions, and accommodations provided through their Individualized Education Programs (IEP), according to an op-ed in The Hill.

The CRPE report found that the shift to remote learning prompted districts to arrange virtual and more easily accessible IEP meetings with teachers, staff, and families. It also catalyzed efforts to prepare parents to support student learning at home.

“There was a corporate effort from the [Georgia] Department of Education in the effort to bring education access to students at home,” said Low. 

She said there were divisions, such as Information Technology, Rural Education, and Nutrition, all coming together to find ways to stay connected to the students while they were not physically in school, such as continuing bus routes to deliver meals to the students and their families. This also included access to the Internet so that students and families could get online.

The pandemic began in late spring of 2020, around the time that school was already getting ready to close for summer break. By the time the schools reopened in the fall, the Department of Education reportedly put hotspots on school buses so students could get access online.

“That was all a really big deal to do, but it was not all falling just on special education’s shoulders,” said Low. “There was a lot of support coming also from the state level, from the Governor's office, as well as from the federal level to break some barriers and get things done really quickly. And of course, the emergency funding came along with that too. But our children that have the most significant disabilities, that was probably our biggest challenge in effectively continuing to serve them.”

Those challenges that students with disabilities faced included physical, in-person access to therapies, instructions, and even socialization with their peers. 

“As districts were trying to make that switch from face-to-face learning to virtual learning and distance learning, they tended to focus more on the academic components. It was new territory for them,” says Elise James, Programs Specialist, Transition Outcomes, Self-Determination Initiatives at the Ga DOE. 

Where it did impact was transition services for those students who were getting ready to graduate high school. 

In its overview of findings, the CRPE report cites that the negative impacts may be especially large for the youngest and oldest students— preschoolers aged three and up, in the earliest grades, and young adults nearing the age of twenty-one, when they transition out of special education and need new, community-based supports.

“When we talk about transition activities, a lot of them are hands-on types of activities that students really need to be in school in order to do,” says James. She refers to what the department calls community-based instruction or community-based vocational instruction. 

This allows students to participate in the department’s 18-22 programs where they actually partner with businesses to place kids in those businesses and have the opportunity to work and get some work experience as well as build pre-employment transition skills. 

“[The Department] didn't necessarily have activities in order to continue to work with our students on those transition skills and transition activities,” says James. “They were battling with trying to learn how to do the curriculum virtually and we knew that transition activities might be something that could take a backseat. We wanted to provide them with resources to be able to continue the work virtually.”

The office developed a website that focused on transition activities that has resources for Best Practices, Self-Determination, and Compliance. The site includes ideas for virtual activities that would allow students to develop employment skills in the areas of employment, going to college and more. 

“These are the kinds of things that the students would've been doing in the classroom had they been there,” adds James.

“It’s evident that moving virtually has had a big impact,” adds Low. “It's made all of our students much more aware about using technology and navigating it. So I would say there's a great increased use of technology in our classrooms as well as those that still are learning through distance learning.”

The Biggest Gap

Low has been in education for 40 years. Out of her entire experience, she’s noticing a barrier like no other. 

“In all my 40 years, I have never seen the gap that we have in teachers being available to be in the classroom,” she reflects, referring to the teacher shortage being felt across the nation. 

According to Georgia’s available data, about 20% of special education teachers were turning over each year. Additionally the state was losing what it calls TAPP candidates, or Teacher Alternative Preparation Program. TAPP is a program for someone with a degree in a related field to switch to becoming an educator. They go through a summer program and they get support for the next two years through classes and mentorship. 

According to Low, the agency loses about half of those candidates to regular education.
“They're not staying in special education because they say to us, ‘I can't learn all your rules, regulations, and paperwork and learn how to manage and teach the children.’ So we took from that, that they're not getting the preparation that they need and the support,” said Low. “So that was a big part of, if we're getting teachers in, but we're losing them after a year or two years, then what can we do to prepare them?”

The state has taken this issue at hand very seriously. The state agency partnered with the Center on Great Teachers and Leaders, which is a technical assistance agency out of the American Institutes of Research, housing the top leaders in the country on how to attract and retain teachers. 

In conjunction with GaDOE, they developed a curriculum for a teacher induction program. The demand was unprecedented. 

“I thought we would implement a few of the regions and do a few the next year. They all wanted it. And so if we had the demand, we wanted to do it. And it's been so well received by our districts,” says Low. 

They operate it through each of its 18 regional centers across the whole state of Georgia. The agency does a train-the-trainer component to the directors, providing hands-on-training for teachers so the teachers can redeliver this training in their neighborhoods. Many teachers have gone through this training, citing 90-95% satisfaction rate. 

“To see the relevance, reliability, satisfaction that they say they have, and to go back and use this information immediately is outstanding,” says Low, proudly. “That’s consistently been the path for the two years that we've had it in effect. So, this summer we're going to develop a second-year curriculum also based on high leverage practices.”

Low also says there is a common complaint heard from teachers across the country. Teachers are bringing to light the lack of adequate supplies, supports, equipment programs, and other necessities needed to instruct the children. 

“We are trying to remove those barriers. The agency created the Special Education School Administrator's Academy, which is a semester-long, virtual course.We wanted to give them practical experience,” says Low. “We bring in a variety of speakers, including our own attorney from the Special Education division to talk about the law, and to give them particular scenarios.” 

Low estimated 25 people to start with would be a great measure on the importance of this program. They had more than 150 people for the first semester, more than 400 for the second.

The Silver Lining

The pandemic recently ended, but there is still a lot of cause and effect that has yet to be seen, researched, documented, and addressed. While gaps and barriers were discovered, other gaps and barriers also closed.

“There definitely was a group of kids that really benefited from it and have flourished in that environment,” says Low, reflecting on students that had peer interactions that may not have been as positive in an in-person setting or where the student was a little more introverted or had anxiety.

“When we were able to go back in person, they requested to stay on the digital learning site, so that expanded the opportunities,” she adds. She references charter schools, traditional brick and mortar schools, the traditional districts, all which expanded digital learning and made it an opportunity not just for temporary learning, but something that students could continue in their education. According to Low, one of the biggest positive changes came to Individualized Education Program (IEP) meetings. 

“We have to have at a minimum, a meeting on each child every 12 months to look at their IEP,” says Low. The meeting reviews what goals they've accomplished, and determine what new goals they need, and how they can best be served. Some parents or family members meet more often if the parent calls for the meeting or the school may too, but the one meeting per year is mandatory.

Special educators are strict with these timelines because missing them would be a violation of the rights of the child and the parent. And IEPs are a huge form of advocacy for students to be successful in the classroom. The meetings bring together a community of people whose supports and services impact the child's learning. This includes all the student’s teachers, and supplemental therapists such as occupational therapists, and speech pathologists. The meeting also needs to have a local education agency representative there that can commit resources.

“That’s about seven to eight people in one room, and a parent can feel lonely,” says Low. “I think the virtual option allowed them to feel more comfortable.”

However, moving virtual challenged teachers to think more creatively about fulfilling these timelines and how to move the meetings online. The results were outstanding.

“What we found is we almost doubled our parent participation as opposed to the in-person meeting,” said Low. “It was easier for the parents to attend, and they can interact and be in the meeting.” Low is now seeing 80-90% participation in IEP meetings. 

The results also were evident in the office’s troubleshooting for transition planning to support students virtually. Transition planning is a component of IEP planning, so districts still had to ensure this was completed for its students to remain in compliance.

Building the website around transition planning, “we had more districts that were able to provide activities for their students to continue to do transition activities,” James says. 

Being able to provide students with the activities that they would've been doing face-to-face in the classroom was really important to the work. The data on results of this virtual learning and transition activities are not available yet. 

However, James says that these online resources have made going back in person a lot easier. 

“When it was time to come back to school or when it was time to place kids on jobs, they were able to do that more easily,” says James, who says The Great Resignation was where a lot of people were leaving their jobs for various reasons. “They found it easier to place their students because there were more openings available.” 

Leading the Way

Regardless of a pandemic, advocacy is the forefront for change. Advocating for oneself or on behalf of someone invites a movement towards something that can be impactful for all. Education for students with disabilities is no outlier. And involving students in their own education journey is important for Ga DOE. They run Active Student Participation Inspires Real Engagement (ASPIRE), an initiative around student-led IEPs. There are student-led IEPs going on around the state, and many districts are using student-led IEPs, even if they're not calling it ASPIRE. 

According to the Ga DOE, the student-led IEP is a vehicle to assist students with disabilities to develop self-determination skills and behaviors. 

By actively participating in their IEP, students learn about their strengths, challenge areas, interests, present levels, services and accommodations. Students have the opportunity to set goals, plan for their future, and develop self-advocacy skills. The teacher guides the student in activities that help the student understand the purpose and components of the IEP document thereby gaining the knowledge needed to participate in the IEP meeting. This helps meet the intent of IDEA and promotes effective transition planning. 

“Student-led IEPs need to be done as early as possible, and that is pre-K,” says James. “And somebody may say ‘pre-K? How are they going to get involved?’ Well, the idea is not for them to be involved like you would expect a high school student to be at age 18. But if you are starting that early, you can actually do what we call ‘chunking’ and give them small pieces at a time so that by the time they get to high school, they're not trying to learn all of this at one time.”

Additionally, student-led IEPs allow students to advocate for themselves and it builds positivity.
It becomes about students having a say and doing it, and it also makes them aware that there's a meeting that goes on about them every year. Leading their own way allows the students to sharpen decision-making skills and problem solving.

“And they should know that.“A lot of kids don't know that until later. And then when they're older, it's all about what they can't do. It kind of changes that focus and it builds that self-advocacy and those self-determination skills,” says James.“The earlier they get that done, the more capacity they have when they get older to be more self-determined, and be a bigger advocate for themselves as opposed to reactive to the things going on in their lives.” 

James remembers a student named Jamal. He was a student with significant cognitive disabilities and a significant speech impediment. She shared that is mother did not want him to participate in ASPIRE and felt like that was a waste of his time because she wanted him to learn. 

“Her big fear was that he would get lost one day, get off the bus, the wrong place, or the bus driver let him off and not be able to tell anybody where he's from in Houston County. This is a kid who had a significant speech impediment. It was very difficult to understand him, but he liked to sing,” says James.

According to James, the teacher convinced his mom to try ASPIRE for one year, and if it was unsuccessful, they would stop the program. His mother agreed. Of the many things he learned, he used his love for singing to learn his address, his phone number and his name. 

“That's what they were able to accomplish with him. His mother reflected on this, and said, ‘I didn't have any idea that he would ever be able to do the things he has learned to do. Not just that part, but other things.’ She said if he had been doing this earlier, who knows how far he would be.” 

This also was impacted due to the pandemic. As IEPs moved online, so did student-led IEPs.

“COVID kicked them into a virtual world and they had no choice but to learn how to do that,” says James. “We found that most of the kids that we would get in these meetings were from the middle Georgia area and about three districts.” 

To ensure participation, James says they created a hybrid leadership program. It's a two-semester program with coursework and it helps the students to learn about civic information, public speaking, communication, being a leader, self-advocacy, and more. 

Today, they call it ASPIRE Ambassadors. 

Advocating for a Meaningful Education

There is no one easy solution to the complexity of issues that existed before, formed during, and were worsened due to the pandemic for teachers and administrators, ultimately impacting students and their families. It was a collision that could only be met with reactionary solutions with proactive hindsight. 

What we will learn from this and how education for students with disabilities will continue to pivot will be determined. But the sentiment for success remains the main goal.

“Our students are protected by their families, protected by the schools too,” says James, reflecting on Jamal’s success story. “We tend to put hedges around them too and say, ‘They can't do that. Don't expect them to do that. Don't expect that.’ But that doesn't allow them the opportunity not to fail. 

“Failure is growth. This is how we learn, this is how we experiment. This is how we find out who we are and what we want. And, they'll move forward. But they don't get that opportunity. And so it's great when we hear these stories and see these stories.We are really focused on trying to improve the outcomes for our students,” adds Low. “Graduation rates have increased dramatically over the years, but our achievement scores still have a lot of room. I want to make sure that kids that are leaving us through graduation are truly prepared to be successful in life.”

Davis is the program director of Creating Higher Education Opportunities to Increase College Experiences (CHOICE), an inclusive certification program for students with intellectual disabilities (ID) pursuing their next steps.

Nestled in Swainsboro, Georgia, East Georgia State College has been a two-year, broad-access institution, meaning it makes college education accessible to most students. Today, the college has over 3,000 students, two additional campus locations and a new student center.

This expansion includes CHOICE. It started in 2015 with just three students. Today, CHOICE has been in existence for eight years, making it Georgia’s second oldest inclusive post-secondary education program following Kennesaw State University’s Academy for Inclusive Learning and Social Growth program.

Davis had retired from the public school system, after over 30 years of service. At the time, IPSE programs were increasing, and a colleague called Davis in to see the plan for CHOICE. “I cried,” she remembers. “They were happy tears because that was the next step for the students that were graduating. I saw so many of them that this program could work for; it would bring new life to them.”

Making the Right CHOICE

Since it began, CHOICE has served 85 students, nine of which graduated in May 2023. The program has been designated by the US Department of Education (DOE) as a Comprehensive Transition and Postsecondary (CTP) Program. To be recognized by the DOE under federal law, CTP programs are required to meet a level of rigor, and they must be at least 50 percent inclusive. Davis says students in the CHOICE program spend approximately 80 percent of their time in inclusive settings. CTP status also allows students to apply for federal financial aid in the form of PELL Grants to attend. The first semester of college is an adjustment for any student, and CHOICE uses this opportunity to allow its students to adapt to change and take advantage of opportunities. Mostly, the students are in charge of their own process of learning.

“These kids breathe, live, walk and talk this campus,” says Davis. “They are in the mix and they are included in everything. Their energy is infectious – the faculty, staff, and other students see their joy and want it. They spend time talking to instructors and ask questions like any other students would. That’s the beauty of them being on campus,” she explained. “They are learning. They are going to try things and mistakes will be made, but successes will follow. By October, there is structure and settling. They know what we are going to do, and they know what they're going to do. They understand because we talk about it.”

Lena Nwakudu, M. ED., a CHOICE Academic Instructor says when students first come into the program, they are a little hesitant at first because many times this is their first time away from home. She also said the students are learning their independence, making their own decisions and they may look to the staff for various support. The undercurrent of all things at CHOICE is communication. Nwakudu focuses on the idea that they encourage their students to “lose the shyness” and learn to talk and advocate for themselves.

“We work with life skills, social skills, and the first thing we stress is communication. They need to communicate with everyone, be it with their classmates, their professors or even us at the CHOICE program. Communication is the key,” explains Nwakudu. “If I can't talk to you or someone can't understand what you're doing, then you're not going to go anywhere. Once they get comfortable with communicating, they learn to be more expressive. Then, they can venture into other things that they might have wanted to do,” she added, emphasizing that at CHOICE, the staff focuses on letting students lead their experience.

“We invite the students into the process of learning,” adds Davis. “I think that's one of the most beautiful things that we do, is that authentic learning. They're exploring and we are exploring because we don't know them yet. We share those things with them, and we talk about our mistakes, and we talk about some of the things, the bumps in the roads that we have and how we got around them or got over them. I tell the staff every October, ‘you'll see a difference.’ And we do. And I think it's that consistent structure.”

It’s a collaborative experience that allows the students to lean into their independence. Outside of academics, college allows students to tap into soft skills, or life skills. One student spoke about his own experiences in the CHOICE program.

“Well, it's really not a lot different from normal college,” says Austin Trevor Rich, who graduated from CHOICE this past May. “There were quite a few things, additional things that helped in building professional skills that I didn't get a chance to get through in my personal life. There were also multiple events which led to us meeting others across the campus and again, improving various skills.

The Importance of Peer Mentors

Along with classes, students participate in study sessions with older students, mentors, and teaching staff to get the help they need for their classes. Like almost all IPSE programs, peer mentors are an integral part of the experience for students in CHOICE. According to an article in the American Journal of Occupational Therapy, peer mentors play a vital role in ensuring students with ID are successful in building campus life skills, social capital and self-determination.

“Peer mentors are, I think, the most important thing to a student’s experience on campus,” reflects Davis. “It's easier for a new college student to speak to another new college student because they go through the same issues. I think it is that needle and thread thing that binds the program because we really have had some great mentors who are dedicated. They know when they apply for the CHOICE program, what we do, who we are, who we are serving, and they are willing to apply.”

Elizabeth Colston, a peer mentor, is a sophomore at East Georgia State College and is also a sibling of a person with a disability. Her brother, John Wesley, also attends college through the CHOICE program.

 “I've seen growing up and with John Wesley too, people would baby him and coddle him,” says Colston. “But they can do everything we can do. They just may do it in a different way. I think the CHOICE Program is a really good example of that and it gets that point across. The students knew their schoolwork. They would take notes in class and then would review them. They just did things differently. And we all do things differently.”

There was an unforeseen moment when Taryn Jackson met Theresa Davis on the basketball court. Jackson was in class and Davis was there with her CHOICE students. Through a series of events, Davis asked Jackson to become a peer mentor. After that, Jackson brought in her brother, Aiden, and then sister, Alora and brother, Tate. You can call it a family affair.

Each peer mentor has a different experience. “For me, I have a bunch of the students that were in my sociology class with me, so I would often-times go over notes and reiterate lessons for them and kind of help them understand things that were maybe a bit more difficult,” says Alora.

For Tate, being a peer mentor has been helpful to him as well. “I was a freshman when I started as a peer mentor, and they're freshmen too,” he says. “So, we were both coming in together to help them out and make friends. We help with the stuff that they might struggle with, and it makes you realize that it helps you too.”

The Art of Letting Go

Like any parent who is preparing to send their child to college, the moment, however exciting, is met with anxiety and lessons on learning to let go. CHOICE’s structure and new experience has also provided parents a learning curve on adapting to change at the same time as their students.

“I think that's hard for us as parents because our natural urge is to protect,” says Amanda Locke, whose daughter Marie attends CHOICE. “And that's not just our kids with extra challenges. It's any child, any parent. You want to bubble wrap your child. You really have to get over that.”

“A lot of the time when the parents come, they are apprehensive about the experience that the students are going to have,” said Darlene Jordan, Ed.S. Academic Success Facilitator. “They want to know if the students are going to get the extra help that they need in order to be successful within the program. We help them understand that the CHOICE staff is here for them and that we are going to help them do what is needed to help them to be successful within the program.” 

Jordan remembers a student who needed an extra pillar of support. She recalls the student being so shy that he would not ask questions. He needed additional support to express what was going on within the class, how he was doing in the class, or what he needed help with. He needed support to ask for help. Jordan started to map out the syllabuses provided to make their classes and workloads more digestible. She said that helped the student realize everything can be mapped out and that it helped him to transform and be comfortable with college. She went on to say that in his sophomore year, he started writing down what the assignments were on his own using the same model to be successful for that year. Jordan proudly reflects that that student graduated from the program with a high average and graduate honors.

“It's still different though,” adds Locke, chiming in. “It's a different setting than they've been in, you know? Some of our kids may have been in our district school since they were three, and that's a long time in one very familiar spot. It is definitely joyful, but there is also this sense that you are going to someplace different.”

Parents are less nervous once they see their kids shine. One parent shared how she saw a positive change in her daughter who is in the CHOICE program.

“When Rinika was in high school, she would converse with peers, but she had a select few,” says her mom, Lynette Tompkins. Rinika is a person who is deaf/hard of hearing. “Her being deaf made her shy. Here, she opened up even more, because she would come home and tell stories of, ‘We did this. And so and so is my friend and I got their phone number.’ And there was a time she wouldn't have done that. She started opening up with the entire student body. I noticed that in her ,” said Tompkins.

Sharonda Johnson, a student at the CHOICE program, reflects on her experience. “The CHOICE program...we're a whole huge family. It doesn't matter what your disability may be, we have a lot of staff and teachers that are willing to go all their way to help you. And sometimes not only with their support. We students inside the program support each other and we get the job done.”

Adam Wilkes, whose daughter Denise has graduated from the CHOICE program, will now be working with the program. But in the beginning, it wasn’t so easy.

“We had an issue where she just didn't want to come, and it was kind of a struggle to get her to keep coming,” remembers Wilkes. “Ms. Theresa and everyone, we all talked to her and said, ‘You know, you don't have very much longer. Just fight through it. You'll get there.’"

Denise graduated and now she will be working with Davis at CHOICE.

“I'm proud of my Denise,” remarks Wilkes. “She’s going to stay here with Theresa Davis and continue on helping other students through the program as well. She's so proud of herself and we are so proud of her for everything that she's done and accomplished.”

“We can try to protect them, but there's a saying, ‘You don't make the road ready for the child. You make the child ready for the road.’ And they're not going to be ready if they haven't learned how to pick themselves up and dust themselves off a little bit,” Locke adds. “We're fortunate to be able to come here and to have people who understand the importance of struggle, that's every bit as much part of the education as writing the papers or learning to speak publicly. Allowing them to do that and helping them understand failure is not the end. It's just a step, and it can make you stronger to get to the next place.”

For more information about the CHOICE program at East Georgia State College, visit gaipsec.org/IPSEprograms.

From a Direct Support Professional (DSP) crisis that was already rising before the pandemic to a need for more waiver slots which has been an advocacy platform for many disability advocates, COVID-19 actually increased the issues that have been experienced by the disability community for years.

The U.S. federal government declared a Public Health Emergency early on during the pandemic in 2020, which allowed for extensions and enactment of programs that were able to provide more resources and relief. Among those was Appendix K that allowed states to request amendments to approved Home and Community Based Waivers (HCBS) 1915(c) Waivers. 

According to Medicaid, it included actions that states can take under the existing Section 1915(c) home and community-based waiver authority in order to respond to an emergency. Other activities may require the use of various other authorities such as the Section 1115 demonstrations or the Section 1135 authorities. 

In Georgia, it affected the Independent Care Waiver Program (ICWP), Comprehensive Supports Waiver Program (COMP), and New Options Waiver (NOW). 

“Appendix K being approved was able to extend services for individuals that receive the waiver(s),” said Naomi Williams, Founder and CEO of Exceptional Living 101. “When the public health emergency went into effect, it allowed for the government to not be bound to rules and procedures you normally have to go through.”

“Specific to HCBS waivers, one of the many things it allowed was payment for family hire. Typically if a family member, say a mom or dad, could not be paid personnel, they couldn't be paid to take care of their son or daughter. But under Appendix K because of the shortage of direct support personnel, family members could be paid as caregivers,” added Williams. 

The Public Health Emergency officially ended on May 11, 2023, which will have a direct impact on Appendix K. 

Making a Difference magazine interviewed Brian Dowd, Deputy Executive Director of Policy, Compliance and Operations Office Medical Assistance Plans at the Georgia Department of Community Health to explain what the ending of the Public Health Emergency means for people with developmental disabilities in Georgia. 

Making a Difference (MAD): What does the end of the Public Emergency mean for the people of Georgia? 

Brian Dowd: Hopefully, the end of the Public Health Emergency means that life for the people of Georgia can get back to normal. It also means that some conditions and provisions allowable during the Public Health Emergency will be coming to a close.

MAD: How does it impact services and support for people with developmental disabilities in Georgia? Specifically, Appendix K?

BD: Appendix K provisions are specific to Home and Community Based Waiver Programs. Provisions of Appendix K are allowed for six months post the Public Health Emergency. In this case that means November. Any Appendix K provision would need to either be incorporated permanently through a Waiver amendment or they would sunset in November. Outside of Appendix K, continuous enrollment in Medicaid has come to an end; and annual Medicaid redetermination began in May. All Medicaid members will resume eligibility determination to ensure their eligibility as before the Public Health Emergency.

MAD: What should individuals with DD and their families/caregivers be considering as the ending of the emergency could change services and supports?

BD: First and foremost, waiver members who receive their Medicaid eligibility through the Division of Family and Children Services should be on the lookout for any information related to a Medicaid review. They should fill out the information and return it as requested via one of the available options for return. Also, make sure your address and contact information is updated either at the Division of Family and Children Services or through the Social Security Administration. Finally, get in touch with your Support Coordinator prior to the expiration of Appendix K provisions to ensure that your service needs are appropriate and continuing as normal post Appendix K expiration.

MAD: Are there ways the Department is working to keep some of the Appendix K benefits that have helped families in the long run?

BD: Yes. The Department of Community Health and the Department of Behavioral Health and Developmental Disabilities are reviewing all provisions of the Appendix K. Some of the rate increases enacted during the Public Health Emergency as well as telehealth provisions have been made permanent already. We also recommend that everyone continue to stay in touch with Support Coordination for additional information. 

For more information, visit the Department of Community Health.

People not only showed up at the capitol with GCDD during the 2023 legislative session, but they also sent a powerful message to legislators. I’m so grateful because to me that’s the “special sauce” of our DD Council – that we are governed by people with I/DD and family members who are committed to making a difference. They are the driving force. 

GCDD has hosted Advocacy Days at the Georgia state capitol during the legislative session for many years. During Advocacy Days, elected leaders meet face-to-face with people with I/DD and their families. This year over 300 people registered for and attended GCDD’s three advocacy days. Additionally, over 6,000 emails were sent to state legislators from advocates around the state. Some legislators got over 300 emails each. Our voices were heard! 

As a result of our advocacy at the capitol and throughout the legislative session, legislators heard how hard it is for people to get waiver services due to the long waiting list and how critical it is to address the Direct Support Professionals (DSP) crisis. We had some victories, but more work needs to be done. Waiver services for individuals with I/DD and their families increased from 200 to 400 yet advocates had asked for 2,400 new waivers. There was also an increase in DSP wages but not as high as advocates had worked hard to increase to better support and improve the DSP workforce. 

It was a fantastic year for Inclusive Post-Secondary Education (IPSE) programs in Georgia. We got a bill passed and saw an increase in funding state funded scholarships. This was a huge win for GCDD, the IPSE program, and the students, families, and schools. 

Now that summer is here, does that mean advocacy stops when the legislative session is over? No. Some may say we are now in the off season for state level advocacy but to me, there is no such thing as an “off season.” Instead, I like to call it the “home season.” Summertime is a great opportunity to get to know your legislators since they will be back in their home cities and are more relaxed. It’s a great time to introduce yourself and have a conversation with them. 

I encourage you to reach out to your legislator and just say, “Hi! I’m your constituent and I’m an advocate for the disability community in Georgia. I would really like to meet you for coffee to introduce myself.” The point is to get to know your legislator and let them know the top issues you care about. Encourage them to use you as a resource. To find out who your representative is visit https://openstates.org/. It's one of my favorite resources. 

The home season is a great time to further advocate about these current issues and issues that are important to you. Currently, GCDD is working on a one-page information sheet about the critical need to increase services for more Georgians to receive the Innovations Waiver and the need to increase DSP wages. This will be a great resource to share with your legislator this summer during the home season.

On July 26, 2023, it will be the 33rd anniversary of the passage of the Americans with Disabilities Act (ADA). When I think about the ADA, I feel like it’s parallel in a bigger way, where there have been amazing wins and yet there’s more work to be done. As one of my favorite professors used to say, “A lot of people think that once you have a law in place, that the fight is over … but it’s not.” Once a bill is signed into law, the goal is to make sure it gets implemented. There needs to be continued commitment, leadership, and so much more. The advocating we do is so important because it continues to ensure success.

We are winning and as we look at the ADA, we should not just celebrate it once a year. Instead, we should celebrate it every time a change is made. We need to celebrate the victories because each gets us closer to enjoying the lives we want. Take a moment to step back and take a look at the big picture of how far we have come. Instead of becoming overwhelmed, let’s focus on what we still need to do. 

Join me in welcoming this new season of positive transition for the disability community. This summer and beyond promises to bring many opportunities of growth for our members, staff, and the work we do to improve services and support for Georgians with developmental disabilities.

D’Arcy Robb
Executive Director, GCDD

“One thing that’s super important is that we’re formed by people with disabilities and we’re the only organization that’s federally mandated to be 51% or more people with disabilities at all different levels at the board, management, and staff levels,” said Dr. Kimberly Gibson, the executive director of disABILITY LINK.

According to Gibson in an interview for Good Morning America, more than 27% of employed people with disabilities lost their jobs during the COVID-19 pandemic. Gibson felt many employers believed the benefits of retaining employees with disabilities outweighed the costs, and much of the disability community has since struggled finding employment.

Through disABILITY LINK, many Georgians with disabilities found an organization that has provided an environment in which to achieve personal growth and feel comfortable in sharing their workforce experiences. “I think it makes an impact because individuals with disabilities can come in here and have shared experiences and better maneuver their lives because they’re able to compare trials and tribulations, whereas [staff] without a disability may not necessarily have that perspective,” said Gibson.

However, the staff at disABILITY LINK also maintain that those with disabilities can pursue their goals if given necessary life coaching. “Our concept is that we don’t want to create a dependency on us,” said Gibson. “It’s like they’re driving the car, they decide where they want to go, and we’re supporting them with directions and resources to get there.” 

Gibson told a story of a young adult helped by disABILITY LINK who, when asked what he wanted to do with his life, responded by saying his mother had told him all he would ever be able to do was collect social security. Through funding, disABILITY LINK was able to give him an opportunity to attend a National Council on Independent Living Conference in Washington, DC.

After attending the conference and meeting many other people his age who were employed, the young man changed his mind and expressed interest in working. “He told us, ‘I talked to all those kids and they’re all out doing a job. Just because they have a disability, doesn’t mean they have to stay at home.’” Provided with independent living skills training, he was much more confident in starting the process.

After receiving help from disABILITY LINK, the young man was able to find employment at a warehouse and develop his own social life. In an email, he thanked disABILITY LINK for showing him there was more to life than a disability check. “Those are the things that we target. We try to prepare people for whatever goals they want in their life, we give them the resources and information, and they can make their own decision,” said Gibson.

Dr. Gibson has a disability herself. A former independent living specialist, Gibson joined disABILITY LINK in Atlanta in 2013 and has worked as executive director since then. She is personally familiar with exercising advocacy, which she also helps disABILITY LINK promote in the community. 

“I come from the old days where we did a lot of civil disobedience to get to where we’re at with the ADA,” said Gibson. When disABILITY LINK moved to Tucker in 2014, one of the first things Gibson did was advocate for safety accommodations for people with disabilities. While advocacy works, there's many forms of it. Gibson explained, "Sometimes advocacy is a nice, pleasant letter. Sometimes it's civil disobedience because the issue is being brushed under the carpet."

One advocacy topic disABILITY LINK highlights is creating accommodations in the workplace and a link between employers and those with disabilities. Employees with disabilities are often underestimated in their work abilities, but disABILITY LINK has done extensive work in eliminating the stigma that workers with disabilities are inferior to their non-disabled peers. Later on, many workers aided by disABILITY LINK were praised as the best employees in their workplace. 

An important part of disABILITY LINK’s process is preparation. “We don’t place people into positions that they’re not prepared to work at. We place them where their goals and ambitions are,” Gibson explained.

Despite the variety of the disability community, disABILITY LINK has helped its local market immensely, providing almost 14,000 information referral services and training 1,433 people in employment skills last year. These numbers show the tremendous outreach disABILITY LINK has achieved within its community.

Visit disabilitylink.org to find out more about disABILITY LINK’s projects across Georgia.

During this year’s session, we had some wins with getting an additional 500 waivers added to the Georgia state budget and we also are dealing with specific “disregard language” around Georgia’s Direct Support Professionals (DSPs) rate study. Disregarding language means Georgia cannot continue the process of increasing the rate. This was a critical need for DSPs. Currently, some DSPs get paid as low as $9.00 an hour to help people who have disabilities be out in the community.

This rate study would have brought it up to $15.18 an hour. This year’s summer advocacy will be focused on educating legislators around why this is such a critical need in Georgia. Georgia’s state legislators are only in session January through April of each year, which gives us a great opportunity to advocate around this issue. 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 your representative is, you can always look up your legislator on openstates.org. On this site, you will be able to find out who your state and federal representatives are. This will be a good resource for any advocate looking to get to know their state and federal officials. Every time you reach out to your elected official it gives you the opportunity to advocate for your community and state.

Even though it is summer, GCDD and our advocates are not letting up on our advocacy. We are preparing to start our summer visits with key legislators’ visits and also preparing to host a few virtual advocacy training sessions. These trainings, which are to be determined, are going to be designed to get advocates prepared to meet with their legislators around the critical need to push the Direct Support Rate Increase forward.

Without this increase, people with developmental disabilities will not be able to be out in the community and be able to be as independent as possible. We are asking all of our community members to reach out to their state senators and representatives and impress and advocate the importance of the need for this rate study.

If you need help or just want some help preparing for this movement, our organization is here for you, and we are happy to help in any way we can. We are looking forward to seeing each and every one of you at our community trainings and eventually at the state capitol fighting for our rights.