Spring 2024

For most kids, summer is one of the most wonderful times of the year. And one thing that makes it pretty awesome is summer camp. There was a time when children and young adults with developmental disabilities (DD) didn’t have access to the same summertime activities as many others. However, more programs are emerging to give everyone enjoyable experiences while adding the life skills of self-confidence, leadership, and character building.

In the U.S., summer camps are a $3.5 billion industry, with about 26 million school-aged kids (about a third of the population) attending for at least a week, according to a report by Bloomberg.

A rise in religion-based organizations, as well as other nonprofits and government programs recognizing the importance of inclusion for all has expanded these quality communities of belonging and social connectedness, said Tom Rosenberg, president and CEO of the American Camp Association (ACA), a national nonprofit comprised of more than 16,000 member camps across the country.

The ACA doesn’t operate camps, but it focuses on empowering camps to create quality experiences for all children and adult campers.

"We're really helping create a world of belonging and growth for folks. And today, this work is so much more important," added Rosenberg. "The visibility of the work is really important as kids prepare to learn in school. We're really here to support camp professionals and camps and the work that they do to create those quality experiences that provide belonging and growth."

Building Inclusive Camps

The pandemic changed the way we all interacted with each other, and it was especially life-altering for people with DD. Camps offered a way for socialization and interaction for campers with disabilities, and after the pandemic, things changed.

Lisa Drennan, Founder of MERGE Inclusion Consulting, has a 35-year career supporting individuals with intellectual and developmental disabilities to be active and engaged within their community. MERGE, based in Massachusetts, is a consulting firm that provides expert guidance to recreation, sport, camp, and community organizations through tailored training programs that empower these entities to welcome, engage, and support individuals with diverse abilities.

Most of the time, camp counselors and directors work with an ever-rotating staff of teens and young adults. How to keep consistency with inclusion principles with a churning staff can be a challenge for camps.

Through her training, Drennan provides resources and how-tos for camps and organizations to build inclusive experiences as a whole team.

There are four program inclusion principles she encourages camps to adopt:

1. Facilitating Social Connections
2. Flexible Thinking
3. Understanding Sensory Needs
4. Making Modifications

Four years later, COVID has brought on some changes and possible resets for camps as they approach a new way of looking at inclusion.

"The difference right off the top is that before COVID, many camps were focused on or had an inclusion specialist or coordinator – someone focused on inclusion," said Drennan. "After COVID, those positions went away – that intentional focus went away. There are fewer specialists, and we were just making progress on this."

Budgets have also been scrapped, so the desire to re-hire these positions is also being affected by money availability.

However, Drennan sees an opportunity. "A recreation program should be all-inclusive. You don’t have to have specialized people to make an inclusive camp," she adds.

As the former YMCA director of inclusion, she recalled that they were pushing individuals with disabilities to inclusion directors, so it wasn’t real inclusion. "Sectioning it off inside an integrated setting isn’t inclusive," she said.

Her principles are that real inclusion must look the same in all settings, for all campers, by all means. "This approach is for everybody—learn inclusive strategies and approaches. Then you will have more authentic inclusion," she adds. Some tactical strategies she provides are visual calendars, list expectations, transition countdown, and positive language.

Drennan recently presented at the national conference for the ACA to a packed house. The need is there and bigger than ever.

She’s learning that there are more social and emotional challenges being felt because of school shutdowns. "We are feeling the impact of COVID isolation, and there is definitely an increase in the need for inclusive thinking from camps and directors who want to address this," she added.

There are many camps figuring out inclusion and best practices. The ones succeeding are sharing resources. There is much more sharing, and camps are meeting at the moment.

Based on Drennan’s work across the country, the camp culture is now about belonging.

"Accessibility and inclusion isn’t enough," says Drennan. "We need to focus on belonging. How do we as recreation programs welcome people with developmental disabilities, and create opportunities for belonging?"

A Place of Belonging

Nestled in Acworth, GA is Camp All For One, housed at Hand, Hoof, and Heart Farms. Founded by Erin Chimberoff, the camp is an inclusive day camp for children and teens with or without disabilities. Camp activities include horseback riding, nature walks, fishing, cooking, gardening, music, arts and crafts, dance, team building games, special guests and so much more.

The camp started in 2016 for one week with eight campers and 20 volunteers. Today, it has grown to five weeks with 12 campers and 6-10 volunteers.

The intention of the camp was inclusion from day one. "I advertised it as an inclusive camp atmosphere, and also put the amount of support we offer, such as 1:1 support, and a list of activities at the camp," said Chimberoff.

The activities, Chimberoff says, are inclusive, meaning that they are all done together with all the campers. This fosters friendships and in many cases, leadership skills.

"I encourage my other campers who do not need as much assistance to find a buddy and make friends," said Chimberoff. "I encourage the counselors to do that as well, to make a buddy system and match individuals."

The camp also utilizes a "Break System," where it allows all the campers to take a break during the day if they don’t want to participate or just need a break. But, there is a caveat – they have to include a friend.

When asked why, Chimberoff explained, "This facilitates friendship and promotes safety, while practicing emotional loops and conversations." It also teaches flexibility, gives a sense of control, allows the campers to learn their limitations, and make decisions for themselves.

The camp involves the local youth from high school and colleges as camp staff volunteers. They learn how to work with children with and without disabilities. Some counselors are also people with disabilities who were former campers.

Hand, Hoof, and Heart also has two other inclusive camps, but Camp All For One offers 1:1 support, so it can work with individuals with severe cognitive disabilities.

Currently, being a farm, the camp is not fully accessible for campers with physical disabilities. "It is something we are interested in, but at the moment, resources to make our farm and facilities accessible are not available," said Chimberoff, reflecting on zoning rules and construction costs. "It’s definitely something we would love to do in the future."

While inclusion and belonging are the key, some camps are specialized to support campers with specific needs that can support them to have a meaningful experience while tending to their needs.

An example is FOCUS (Families of Children Under Stress), which offers various Camp Hollywood locations throughout Georgia. There are seven locations: Lawrenceville, Alpharetta, Peachtree City, Decatur, McDonough, Marietta, and Atlanta. The nonprofit was formed more than 40 years ago by parents seeking support for themselves and their children with rare genetic illnesses.

It quickly grew from a small living-room support group into an organization with innovative programs for children with developmental and physical disabilities and their families. In 1994, it launched the first Camp Hollywood day camps to give children the care they need – and the fun they deserve. Their mission is to support parents and their children with developmental and physical disabilities.

"We offer summer camps for our children who cannot go to a regular camp," said LaShayla R. Clark, development and communications director. "We do a lot of family activities."

FOCUS currently provides services for more than 4,500 Georgia families.

"We try to do as much as we can on the front end so that when the families show up to activities, they can just enjoy themselves and not have to worry about the different things that families typically have to worry about, like, do they have ADA bracelets, … what’s the best entrance and all those different things," said Peter Otim, program director. "We’re going to offer nine total weeks of camp. Our families are able to participate for one week of camp throughout the whole [Atlanta] metro area."

FOCUS also has two camps in Marietta, two camps in Decatur, and one each in Alpharetta, Lawrenceville, McDonough and Peachtree City.

"Our summer camp is designed to be a slower paced camp [than typical camps] so that all of our campers can participate regardless of abilities," said Otim. "We spend a good bit of time combing through the activities and making sure that it is something that fits everyone."

Emphasizing the "Hollywood" theme of the camp’s name (where every camper is a star), all of the activities are loosely based on family-friendly movies. Like other camps, FOCUS has staff and volunteers to handle activities and lead groups.

But unlike many, it has staff who take care of specific needs of some of the campers, such as:

• Nurses for medical care, including G-tube feedings and seizures.
• Male and female toileting attendants for diaper changes and restroom support reminders.
• A caregiver to child ratio of 1:4, with community volunteers for additional support.

While FOCUS has the same challenges as other camps to attract and maintain quality staff, it has an advantage, too.

"The majority of our staff have been with us for multiple years. One has been with us about 25 years now," said Otim. "They understand our kids. They know how to take care of our kids."

Maddie Farrell is one of those staffers who has been coming back year after year. She began as a volunteer while she was in high school.

"In high school, I just had an interest in working with people with special needs. And my high school offered [an] internship program," said Farrell. "I did half of my time in their office, so I helped plan some of the activities for the camp. They … gave me a background on some of the kids that they served and I helped do adaptations [to] activities so that all the kids could access them."

Farrell eventually worked more with the campers and realized she’d found her life’s work.

"I just fell in love with it. The people who work there are wonderful. And honestly, I still know a bunch of them to this day. They still work there as well," she said. I knew them as volunteers, and then as I got older, I became an employee. And so I still work with the same people, and they’re just such a great group of people, and they really understand the population that FOCUS serves."

It’s the level of care and professionalism that keeps Tami Slaton sending her son, Emerson, to Camp Hollywood every summer since he was 6 years old. He is now 10.

"The challenge for me for a lot of the time was, ‘where do I take him during the summer?’ Emerson does have therapies once a week and we try to take him to the pool, but I wanted him to find his community. Typical kids have their own community. They have play dates, they have sleepovers, they have their own group of friends," said Slaton.

The quandary was where Emerson could go without his parents. Where could he learn coping skills and gain confidence? Then they found Camp Hollywood, a place for him with peers who have similar challenges to him and where he can still receive quality care.

"A lot of times I would find places that [would] take him, but then they didn’t know how to deal with a diaper change or they didn’t know what to do if he was having a seizure or they didn’t know that he needed to get out of his wheelchair," she said.

Emerson has cerebral palsy and is nonverbal. His mom said he can do most things with support.

"But because he’s so precious and cute, people will just let him sit there because he’s not a disruptive person. His medical challenges aren’t such that you need to have your eyes on him all the time. He does have his own little things, and if given support, Emerson can participate," said Slaton. "But a lot of times we were finding people that were saying, well, we’ll do this with him. But then I would pop up, and he was just sitting in the corner."

Advocating for Better Camp Experiences

Families should determine what type of camp is best for their child. Rosenberg encourages them to use a checklist to decide what works. Some ideas to include are:

• Review expectations and values of the camp.
• Visit camps.
• Interview camps.
• What is the camp’s philosophy and program emphasis? Each camp has its own method of constructing programs based on its philosophy. Does it complement your own parenting philosophy?
• What is the camp director’s background?
• What training do counselors receive? At a minimum, camp staff should be trained in safety regulations, emergency procedures and communication, behavior management techniques, child abuse prevention, appropriate staff and camper behavior, and specific procedures for supervision.
• What is the counselor-to-camper ratio?
• How are behavioral and disciplinary problems handled?

Drennan also provided advice on what parents can do to advocate for their camper, and how to have a meaningful experience for the entire family.

She suggests that parents:

• Form good relationships.
• Be as honest as possible upfront with the camp about their child’s needs, behaviors, and anything else so that there are managed expectations.
• Ask their children what they want to do or love to do.
• Create a social story with their camper.

Tami Slaton, mentioned earlier, agrees. She has certain questions and criteria that she uses and drops in to see the results for herself.

"I have gone to the camp and I like that they have an on staff nurse," she said. "I like that I fill out a questionnaire about the things that [my son] can do, can’t do, and they have somebody that helps with the changing of his diaper and that he’s engaged during the day."

She has specific questions that she asks. "The first thing is I try to tell all new parents that are starting off in this journey that it is a journey. It’s not a race, it’s not a quick fix," she said. "This is their life now and we’ve got to adjust to that. So the first thing I try to tell people is to find you a village, find you a group that can help support you."

Other questions she suggested: Does your child have seizures? Does your child need time out? Does your child need hand-over-hand guidance? Hand-over-hand guidance involves someone assisting you in a task by physically directing your hands, such as demonstrating how to control a video game character. This technique is employed during skill acquisition to provide physical support and foster independence in the learning process.

Drennan adds, "Sometimes there is a difference in perception from parents – what their child needs versus what they think they need," she says. "Like, does a camp provide 1:1, when their child really doesn’t need it, or the other way around. So, that conversation is really important."

Making Meaningful Memories

Through surveys, interviews and feedback, ACA has discovered that what kids want from camp is simple – they want to be happy. And for campers themselves, being at camp can be a great experience for fun and making connections and friendships that can last a lifetime.

In self-advocacy training, Drennan encourages individuals with disabilities to be curious and take steps to make recreational activities a good experience.

Some tips she provides in her training include:

1. Going for a tour to calm any anxiety or nervousness;
2. Learn what level of inclusion is offered by the camp or program (inclusive, peer buddy, adaptive, etc.);
3. Learn about expectations like what to bring, what the schedule is going to be like, etc., and
4. Enjoy the journey! 

For individuals who hit hurdles during the experience, she suggests that campers talk to counselors or directors outside of the activity or program to ensure their needs are being met.

Chimberoff also suggests the campers think about what kind of experience they want to have at camp.

When it comes to the kind of camps that a parent and child might be considering, "Campers should be asking themselves if they want to spend a week outside, be in the heat or whatever elements that camp takes place in," said Chimberoff, reflecting on her outdoors camp. "Are these the activities you are interested in or are they focusing on your interests?"

At Camp All For One, Chimberoff also uses certain moments to teach recognition and advocacy.

During a moment where a camper may not be able to regulate or express their emotions clearly, "it becomes a teaching moment where I can teach the other campers how to identify someone in distress and how they can advocate for their friends when they can’t advocate for themselves," she adds.

Camps should commit to diversity, equity and inclusion

ACA has made a commitment to diversity, inclusion, and equity (DEI) as part of its mission. According to the ACA website, advancing DEI at camp is a growth strategy on two fronts. First, it is a viable business strategy to ensure the economic sustainability and growth of individual business models. Second, it is a strategy for providing the critical educational and developmental growth children require to reach their greatest potential.

Furthermore, focusing on DEI will ensure that camps meet the changing needs of families while also being an essential tool in addressing historical inequities. While every camp cannot strive to serve every child, they will significantly benefit from prioritizing and advancing DEI in their programs.

"We are really focused on empowering camps to create quality experiences for all people," said Rosenberg about ACA and its members. "We are really helping create a world of belonging and growth for folks. And today this work is so much more important. The visibility of the work is really important as kids prepare to learn in school [and] young adults prepare [to work]."

Working at the Hands, Hoof, and Heart camps is the first step for individuals with and without disabilities into careers in education and agriculture. "We have been the first for so many to step into the workforce," said Chimberoff. One of the camp counselors, who has a disability, is volunteering with Camp All For One because he is interested in a career in education.

Also, there have been several camp volunteers who have gone into special education careers because of this experience.

Rosenberg reflected on the work of ACA and said, "Camps provide kids with powerful lessons around community and character building and skill development and how to live healthily."

To help search for camps that meet your child’s wants and needs, the ACA has a find-a-camp tool on its website. FOCUS also has a collective list of camps in Georgia that includes inclusive camps and camps focused on serving only campers with disabilities.

Headshot of D'Arcy Robb, GCDD's Executive Director

As I sit down to write this, I’m feeling raw. We just wrapped up Georgia’s General Assembly session, and it was a real mix of wins and losses.

Win – the developmental disability (DD) rate study. All summer, fall, and winter long, we at the Georgia Council on Developmental Disabilities (GCDD) worked in tandem with multiple other organizations to press the case for why a rate increase was so critically needed. Thank all that is good – it worked.

“You all did a good job making the case,” a person deep inside the state budget process told me. “It was a heavy lift, but it was the right thing to do.” Maybe I’m going too deeply into semantics here, but I love how the phrase is used – “you all.” There were so many of us advocating, disability organizations and individual advocates alike, that it was a “you all” kind of operation, for sure. Our state leaders heard us and got behind us – the rate study was supported in Governor Kemp’s budget and by the House and Senate alike.

Heartbreak – only 100 waivers were approved after 500 were approved last year and 513 the year before. Only 100 new NOW/COMP waivers were added to the budget. From a dollar and cents perspective, it’s true that the rate study was a major investment, which, unfortunately, can make it harder to get additional investments like waivers. But it’s also true that Georgia’s fiscal effort on adult DD services is among the lowest in the Southeast. Most importantly, thousands of Georgians and their families still await much-needed services.

Infographic of Advocacy Results

I think of our advocacy like a snowball. The rate study was a huge step in an excellent direction for Georgia. Now, we keep going to ensure that every Georgian with a DD receives the supports they need when they need them.

Another beautiful win was the passage of Senate Bill 384, Georgia as a Model Employer. With the passage of Senate Bill 384, every state agency will get training and technical assistance to support them with the recruitment and retention of employees with disabilities. The idea of Georgia as a Model Employer grew wings this year, thanks to its inclusion by Lieutenant Governor Jones on his priority list. And, once again, we brought our best “you all” advocacy muscle to the effort. Disability advocates were all over the capitol on Advocacy Days, educating lawmakers about the contributions people with disabilities can make to the workforce.

This year, GCDD saw another terrific win for inclusive post-secondary education (IPSE). Last year, IPSE grants were legislatively created and partially funded in the state budget. This year, they were fully funded, putting IPSE within reach of a new group of students for the first time.

We didn’t get everything we worked so hard for during the legislative session this year. Both, the effort to end the sub-minimum wage and create an Intellectual and Developmental Disabilities (I/DD) Commission in Georgia gained traction. Still, they failed to make it across the finish line. Talk about two heartbreaks on the final day – we were this close!

However, I remind myself we are not only the beloved community. Our community is resilient, creative, and determined. Together, we will keep working to get where we need to be.

Let’s stay focused and continue strong in our advocacy to ensure that changes for the better will continue.

D’Arcy Robb
Executive Director
GCDD

The State of Georgia kicked off its legislative session in January, and the Georgia Council on Developmental Disabilities (GCDD) was front and center to advocate for the disability community across the state. During the session, GCDD hosted its annual Advocacy Days at the Georgia State Capitol. Advocacy Days is an opportunity for GCDD, self-advocates, and the developmental disabilities (DD) community across Georgia to meet, educate, and inform legislators about issues that are important to Georgia’s disability community.

This year, there were three days of advocacy at the Capitol focusing on:

• Increase funding for Inclusive Post Secondary Education (IPSE).
• Increase in wages for direct support professionals (DSP) and an increase in the number of Medicaid waivers allocated to people with DD each year.
• Employment equity (abolishing 14(c), the law that allows employers to pay subminimum wages to people with disabilities).

Additionally, GCDD hosted “A Seat at the Table: A Transformative Conversation Around Equity, Disability and Support” at the Georgia Public Broadcasting office in Midtown Atlanta, led by Story Muse, in partnership with Equitable Dinners, L’Arche Atlanta, and Out of Hand Theatre. It brought together art, dinner and discussion about the value of equitable opportunities and support in the lives of Georgians with DD and their families.

IPSE Day – January 24, 2024 

Georgia has been leading the way in advocating for Inclusive Post Secondary Education (IPSE) programs. Currently, the state has nine schools supporting people with intellectual disabilities (ID), with a 10th program starting at Berry College in Rome, GA. 

These programs tap into the potential of college-age students with ID to learn skills and get education that can help them to join the workforce as skilled and talented employees and to live independently after college. 

In 2023, GCDD and its partners advocated for receiving funding from the General Assembly to fund a state-supported IPSE scholarship to help make these opportunities more affordable. This year, the community is seeking to expand the program.

Students and representatives from University of Georgia, Berry College, Albany Tech, Georgia Tech, Georgia State University, and East Georgia State College came together on January 24, 2024 at the Gold Dome to meet their representatives and discuss the opportunities available at their schools and how more funding towards scholarships will support more students and families to afford these programs.

From left to right: Regina Watts, Director of Albany Tech’s IPSE Program (LEAP), Sen. Freddie Powell Sims (D-District 12), Starr Bruner, GCDD

Attending Advocacy Days for the first time was Regina Watts. She is the director of the Leveraging Education for Advancement Program (LEAP) at Albany Technical College. LEAP has been in existence for six years and is the only IPSE program at a technical college. 

She joined the advocates at the capitol to stress the importance of the IPSE program. 

“My goal here today is to open up doors for more technical colleges because Albany Tech is the only technical college in the state of Georgia that has an IPSE program,” said Watts. “With additional program fees that we are asking for, other technical colleges can have the opportunity to bring in students to take advantage of the college experience.”

While certification from Albany Tech is the road to employment for many of the IPSE students, some continue with their education for additional certifications.

“The majority of our students are leaving and becoming employed. We have students that are working at the Phoebe Putnam Memorial Hospital. We have students that work at the Marine Corps logistics space. We have students working at the YMCA. We have students that are going on to get a different certificate,” she said, adding that one student was to become a certified nurse assistant.

“It opens up doors for our students to believe in themselves and the sky’s the limit,” Watts said.

Throughout the day, students and program directors moved around the Capitol building, stood at the ropes to meet their legislators, and had some memorable moments while advocating for their school programs. 

The students from UGA attended the Higher Education Committee meeting, arranged by Rep. Gaines (R – District 120). There, they were able to speak to the committee to thank them for their support of the program that has helped so many students with disabilities build confidence, camaraderie, and careers. 

Theresa Davis and East Georgia State College IPSE students with Rep. Larry J. “Butch” Parrish (R-District 158)

At the same time, students from East Georgia State College, from Swainsboro, got a glimpse into the life of a representative and how their work is done. They visited Rep. Larry J. “Butch” Parrish (R – District 158), who represents Swainsboro, in the Gold Dome. In their visit, Rep. Parrish commented on their advocacy efforts, reminding them that communicating with their local elected officials is always important.

“I got some letters from some of you guys, some emails, and we sent you a letter back,” said Parrish. “We sent a letter in response to your emails about the funding on the program and we’re going to do all we can to try to make sure that continues too.”

The students and program directors got to visit the chamber floor where bills and laws are discussed and voted on. 

Waivers and Wages Day – February 8, 2024

Georgia’s disability community is in a state of emergency regarding the Medicaid waitlist and direct support professional (DSP) wages. Currently, Georgia has a waiting list of over 7,000 people in need of home and community-based services (HCBS). 

Sen. Sally Harrell (D-District 6) “It’s been 25 years since the Supreme Court’s Olmstead decision, which said that people with disabilities have a right to state-funded services to live and thrive in their communities rather than being forced to live in institutions,” Rep. Sally Harrell (D – District 6) said at a press conference during Advocacy Days at the Capitol. “And it’s been nearly 16 years since our state entered into a settlement agreement with the Department of Justice and committed to giving Georgians with intellectual and developmental disabilities the support they need to live in their own homes and lead productive lives.”

Harrell has been a long-time champion of the cause to end the waiting list for Medicaid waivers. 

“We’ve made some progress in Georgia with [intellectual and other developmental disabilities] issues in recent years because this community has shown up and been loud and because you’ve been loud, we increased funding for waivers from approximately 100 per year to 500. We passed Senate Bill 610 to ensure Georgia did reimbursement rate studies every four years so that wages for our service providers kept pace with the markets,” she said. 

Harrell and Sen. John Albers (R – District 56) co-sponsored a senate study committee on Georgians with DD to create a roadmap to deliver on the promise that Georgia made 16 years ago to build on a comprehensive community support network. Harrell added that now it’s a simple three-step process.

1. Pass Senate Bill 198 creating a Georgians with Intellectual and Developmental Disabilities Innovation Commission. This is modeled on the successful Behavioral Health Commission made up of experts and advocates that will roll up their sleeves and work on updated solutions for the long-term challenges of Georgians with DD. The commission will tackle issues like supportive employment, housing, managed care and more. 
2. Fully fund the DSP provider rate study in the Fiscal Year 24-25 budgets. 
3. End the waiting list for NOW and COMP waivers. According to the state, NOW offers services and supports to enable individuals to remain living on their own or in their family home and participate in the community. COMP is for individuals who need comprehensive and intensive services to live in the community and not a residential setting. 

“Individuals are waiting for supports and services that are vital to avert the crisis, to support people in a way that they should be supported in their local communities with their families,” said Harrell. “Telling a family to wait for I/DD support services and to wait for a waiver is like telling a hungry family to wait for food stamps. This is sustenance. These services keep families together and we have to stop making people wait.”

Priscilla Hackstadt and her son Christopher Priscilla Hackstadt came to the Capitol to advocate for her son Christopher, who is non-verbal. He’s 18 and has a rare genetic condition called Phelan-McDermid Syndrome, which means he doesn’t develop like other kids. Right now he’s in a transition program in Gwinnett County. When he turns 22, he will age out of the school system.

“[Without] a NOW or COMP waiver, we won’t have the funding to put him in an adult day program. And that’s a big concern for me. That’s why I am here doing advocacy days,” said Hackstadt. “Christopher is nonverbal and requires full, sometimes partial assistance with all activities of daily living. We’re talking about toileting, bathing, dressing, eating, and if he doesn’t have a program that’s like the one that he’s in right now with the Gwinnett County School system, then that means that he’s not out in the community. He’s not going to be thriving, he’s not going to be learning. And it breaks my heart to think about that.”

Tais Keyser, a Johns Creek mom and an advocate with Unlock GA, a broad-based coalition whose mission is to expand and enhance home and community-based services to fully support Georgians with DD, spoke out on behalf of her oldest son, Isaiah. 

“He is 22 and has autism, an intellectual disability, and he struggles with a mental illness,” she said. “He needs support to dress himself appropriately. He doesn’t grasp the concept of time or money. His reading level is at a kindergarten level. Isaiah needs help with the simplest things like pouring milk. He needs long-term support for the rest of his life.”

Like Hackstadt, she fears for her son’s quality of life.

“I applied [for the NOW/COMP waivers] four times and I was denied four times. The last resort was to sue the Department of Behavioral Health. After spending $60,000 in expenses, I won. After years of fighting, Isaiah was finally deemed eligible,” she said. “It was emotionally, financially draining for me and my family and that was just to get my son a spot on the list. Technically, we do not have the waiver.”

Dorothy HarrisDorothy Harris of Fitzgerald, GA is a self-advocate with United for Change, a grassroots network of self-advocates across the state. She’s been active in self-advocacy for more than 20 years. 

“There has to be a group of legislators who learn and listen and better understand what we need so that we could grow as contributing citizens in our community,” she said. “A commission will give us a place and a government official to discuss our hopes and dreams and issues like transportation, employment, affordable housing.”

She added that it’s important for DSPs to make a livable wage. 

Last year, the Department of Behavioral Health and Developmental Disabilities (DBHDD) funded a rate study around DSP pay. The study found that Georgia’s DSP community desperately needs a rate increase to help support people who work in this field. GCDD has been meeting with legislators, gathering support and advocating to ensure that the DSP rate study be fully funded. That would come out to $107 million. In addition to funding for DSP wages, GCDD has requested that the state support an additional 2,400 waivers annually, which is about $65 million. Read more here.

DSPs also came to Advocacy Days to make their voices heard. Wearing black t-shirts with a woman’s face on it, the lettering in the hair spelled out “We Dream in Black.” Convening from throughout the state, most of the workers were Black and brown women. Many started off caring for family members and found they had an aptitude for the occupation.

Sharon Brawley now works in private home healthcare, but there was a time when her patients were those who relied on Medicaid waivers for payment of services.

“We [were] overworked and you had to do a whole lot of everything, which was the job, but it was not enough compensation because Medicare and Medicaid wasn’t paying overtime,” she said. 

Although her situation has improved, she speaks out for the Macon area.

“These people are taking care of their family, but [the system] was leaving them out in the cold,” she said. “Through this job I learned that you have to just really take the money out of the situation and just give [the clients] the best care that you can give them. So that’s why I’m still in home healthcare and I don’t think I’m going to ever leave it. Whether the pay changes or not, it’s not about the pay.”

That was the sentiment across the board. People who care about providing needed services want to do a good job and be able to take care of their own families financially.

Shaquel Williams said that working with people with DD requires special skills and certified annual training.

“There are certifications every year that cost money for people who are making probably $10 to $12 an hour and you’re paying like $500 to be certified in your job,” she said. “[We have] all the love it takes to be a home care worker. We just want the pay to go with it.”

Advancing Employment First and Ending Subminimum Wage Day – February 21, 2024

Last year, the DD community in Georgia identified an underlying issue around paying people with disabilities below minimum wage, also known as subminimum wages. It is legal in Georgia to pay people with disabilities below minimum wage compared to those without a disability. 

During the 2023 legislative session, GCDD’s public policy team met with legislators to talk about the issue. The conversations continued over the summer and a bill was presented to help end this unfair practice. The “ask” during Advocacy Days was to get the bill passed.

Rep. Sharon Cooper (R – District 45), chair of the public health committee has actively sought to end the legality of section 14(c) of the federal Fair Labor Standards Act in the state of Georgia. Under 14(c), employers who are granted the certification from the federal Wage and Hour Division are allowed to pay special minimum wages — wages less than the federal minimum — to workers who have disabilities that reduce their level of productivity for the work they perform.

She and Rep. Scott Hilton (R – District 48) have sponsored House Bill 1125 which will end the practice of paying subminimum wage to individuals with disabilities.

“Chairwoman Cooper and I were shocked to find that on average folks with a disability are paid somewhere just above $3 an hour,” said Hilton. “Your work is meaningful. Your lives are meaningful. We want you to work, be productive and earn a wage that is commensurate with what you deserve.”

Hilton knows first-hand how the unfairness of this practice can affect a family.

“As the father of a child with a disability, my son, 14 years old, Chase, when he grows up, I want him to work in a happy, healthy, productive job earning a wage at what he ought to be paid,” he said. 

Stacy Ramirez, GAPSE Public Policy Liaison Stacy Ramirez’s 29-year-old son has autism and she has a 2-year-old great niece with Down syndrome. Speaking as public policy liaison for the Georgia chapter of the Association of People Supporting Employment First (GAPSE), she represents an organization that focuses solely on employment and careers for people with disabilities.

“[My son] Ryan needs supported employment to help him better understand the social interactions of coworkers, to break down the steps of what he’s meant to accomplish, what he’s hired to do. If you break down those steps and you have the right supports, he shines,” she said. 

Although he’s not a drinker, he worked at a bar where he knew his job and was respected by his employer and the patrons. The establishment went out of business and now Ryan is back at the beginning looking for a job that will allow him to work and make a fair wage.

“For me, abolishing 14(c) is a human rights step in the right direction,” said Ramirez. “I found it best to work alongside a supported employment agency that has the same values as Ryan and I do. And that’s true employment looking towards a long-term career.”

Danny Hoover is the Chief Operating Officer of Diversified Enterprises in Tifton, Georgia. It’s an agency that works to empower individuals with support to live, work and participate fully in their communities. He brought a group to Advocacy Days to show that people with disabilities want the same things as everyone else – fair wages.

“We only provide community integrated employment. So no person that we support does any type of work or receives any type of support that is outside of a place and time that they want,” said Hoover. “It is really exciting because we have some people that … work for the city and county and do some maintenance type work. But then we also have someone that works at the Harley Davidson shop and she does some clerical work there. And then we also have someone else that works for another agency that helps to support us as an agency.”

Hoover added that there are no limits to what people in the disability community can do.

“We have people that are right now trying to seek entrepreneurship. So we’re going to try to tap into Synergies Work here in the state of Georgia and see if we can get that person on an entrepreneurial path. And then we also have people that work at the hospital and we have people that work in grocery stores. We have people that work in factories, we have people that work in distribution centers and those sorts of things,” he said.

One of his success stories is Lance Smith who works for Tift County in the UGA extension office. 

“I clean there. I sweep, take out trash, I mop, I clean bathrooms and I work three days a week, four hours each day from 8 a.m. to 12 p.m.,” he said.

Smith had a job coach who showed him how to perform his work without supervision and stay on task.

Lance has been at his job for three years and enjoys that he has his own money to enjoy the things he likes to do. The support and feedback that he receives has boosted his confidence so much that he has advice for anyone like him who is reluctant to try employment.

“I would say go for it,” said Smith.

Yolanda Powell is the new community employment manager at Diversified Enterprises. She supervises job coaches, onboards new people who need support and helps them find jobs that they desire. 

“When I first started with Diversified, I was a job coach in supported employment and it was tough working. I actually helped meet the cleaning crew and it was tough doing that work because I could see the talents, the gifts. I could see the hunger in the individuals wanting more,” she said. 

At the time, Diversified was a company that had a certificate for 14(c), but eventually, group work, what they call enclaves, went away and the people were trained for individual tasks.

“People began to be put in typical jobs with competitive pay,” she said. 

Before working at Diversified, Powell was at a Target distribution center. She had a coworker with DD and through Diversified she eventually became his job coach.

“It was good seeing the movement of 14(c) going away,” said Powell, adding that it was 2007 when things changed at Diversified. Powell has a 12-year-old son with Down syndrome who talks about the day he’ll get to go to work.

“We’ve gone from being a firefighter to having his own food truck,” she chuckled.

Powell is overjoyed to be a part of a future where people like her son can see their employment dreams come true.

“We’re really focusing on those gifts and talents that people have and that they’re willing to share. … They want to share their talents, they want to contribute, they want to be a part of the working world,” Powell said. ”When I think about my son six years [or more] from now … when he’s 17, 18, 20 years old, [he’ll be fulfilling his dream] by having that taco food truck being an entrepreneur.”

Becoming An Advocate

Building relationships with elected officials and speaking up for oneself is important when it comes to advocacy. In order to help build confidence and ensure that they have the proper information and tools to complete their mission of educating and urging laws and appropriations for people with DD, GCDD organized virtual and in-person events to prepare the advocates.

On February 6, 2024 at Georgia Public Broadcasting, GCDD hosted “A Seat at the Table: A Transformative Conversation Around Equity, Disability, and Support.” An additional virtual event was hosted on February 27th. 

These two gatherings brought together art, dinner and discussion about the value of equitable opportunities and supports in the lives of Georgians with DD and their families. It is the latest work of the GCDD Storytelling Project led by L’Arche Atlanta. 

Working alongside GCDD and L’Arche were Georgia based Equitable Dinners and Out of Hand Theatre. Equitable Dinners has paired with Out of Hand Theatre and they both have years of expertise creating meaningful conversations and change around educational racial disparity issues through the combination of art and dialogue and bringing people of diverse backgrounds together in a facilitated conversation about complex issues. This was the organization’s first event focused on disability.

Sahlimah Abdullah, 14, and her mom Sadiyah Abdullah attended the dinner as their first foray into advocacy. It was also their first time advocating with GCDD this year. 

“I really want to make sure that she can have her needs met by being able to speak for herself instead of me speaking for her all the time,” said Sadiyah Abdullah, who attended the Equitable Dinners event.

As an educator, Sadiyah Abdullah is used to advocating for children with disabilities. 

“I was a principal, and so I really fought for parents to have a strong voice whenever we held IEP meetings. And then God decided I’m going to give you one that you can train up for yourself,” she said.

Sahliman and Sadiyah Abdullah Sahlimah Abdullah had been in inclusive settings in elementary school, but when she transitioned to middle school, her parents were told she didn’t belong in the same classes as the other students.

“I was the one that was doing all the advocating on her behalf, and that’s not what I want,” said Sadiyah Abdullah.

Meeting with her state legislators and making her concerns known was a valuable lesson for Sahlimah Abdullah. She’s been in ballet since she was four years old and was recently accepted into the School of the Arts program in Columbus, Georgia. 

“She was the first child with Down syndrome to have been accepted into the program. So that’s why we had a lot of pushback,” said her mother.

The middle school experience prompted Sahlimah Abdullah to insist that her mother home-school her. 

“That was her first introduction into advocating for herself. Because what she was telling me … that setting was not meeting her needs,” said Sadiyah Abdullah. ”That’s when I really started to understand I have to give her the words and the experiences to be able to stand up for herself.”

The encouragement to tell her story has kept Susan Berch on her path of self-advocacy. She also attended the Equitable Dinners event.

“I’ve been in many advocacy programs – Partners in Policy Making, My Voice by Petition, My Full Word. And then I joined Uniting for Change in 2019 or 2020. Self-advocacy means the world to me. It means speaking up [for] your rights and others with disabilities,” she said. “Rise up and speak out. It’s very important. If you don’t speak up, you’re not going to get what you want in this world.”

Berch has lived on her own since 1993. She has a dog, Gabby. She pays her own bills, takes public transportation and enjoys outings with friends.

“I feel that advocacy is a way to recognize people with developmental and physical disabilities. People should be recognized for who they are,” she said. “My parents raised me to do what I can and to let me try new things. They do not in any way hold me back.”

The Work Continues

The end of Advocacy Days isn’t the end of the work for self advocates – the work continues.

“Everyone wants to be able to live independent lives, to work, play, have kind of their own autonomy over their own lives. And so this is kind of a way of bridging that gap,” said Ryan Shindler, GCDD’s Public Policy Fellow. “Like getting rid of subminimum wage for people [with disabilities], providing active hiring within the state for people [with disabilities], things like that to really ensure us to live independent lives within our community.”

And 2024 brings us another presidential election year. This year, not only will Georgia residents vote for a president, but all seats in Georgia’s General Assembly are up for election.

Self-advocates are encouraged to keep up with their state assembly representatives and senators and continue building relationships in the following ways:

• Keep your connections! Visit legislators at their local office in your district. Attend functions where they are in attendance when you can.
• Continue to share news about efforts in the DD community to improve quality of life for its members. This can be done through phone calls, emails and visits.
• Track bills that are important to you and congratulate assembly persons when something they sponsored becomes a law. 

“Telling my own story is important because it makes it personal to me, but also makes it relatable to the person I am talking to, such as a legislator, because then they know my story and how it affects me,” said Lawrence James “LJ” Young, a member of the leadership collective of Uniting for Change. “And then they can take that and introduce a bill or policy change that would change it for not just me, but other people who have similar situations.”

For children with disabilities, school can be a stressful and overwhelming time. The Georgia Council on Developmental Disabilities (GCDD) sat down with Leslie Lipson, an attorney and director of the Georgia Coalition for Equity in Education, to discuss how students, parents, and primary school faculty can navigate the process of laying out the individualized education program (IEP) for students with disabilities to receive an educational experience that meets their unique needs and equips them for a future of self-advocacy and success.

“An IEP is a legal document that says that an eligible child is a student with a disability and that they have certain legal protections and legal rights,” Lipson said. “Students who are eligible for special education and related services under the Individuals with Disabilities Education Act (IDEA) are involved in the creation and implementation of an IEP. The IEP is a legally mandated plan which outlines what that education will look like and provides necessary accommodations.”

A large part of the IDEA is the Child Find Mandate, which is the legal obligation of schools to seek out and identify students with disabilities and provide them with an appropriate education. Often, this process begins with parents, teachers, or social workers identifying struggles in a student’s studies. After a student with a disability is identified, the eligibility process begins.

Eligibility and Evaluation

“The eligibility process involves specific evaluations done by a school psychologist, but it can also take information from the student’s medical doctors and classroom teachers,” said Lipson. A very successful evaluation also extensively involves parents and the student in question to give a full picture of the child’s needs.”

The evaluation process culminates in an eligibility meeting with the school to discuss findings and decide whether the student is eligible for an IEP. If the student is eligible, a plan will be written. Much of Lipson’s work involves implementing IEPs, ensuring that students with IEPs receive education and resources that align with their plan. 

“I never get called by people with bad plans when their education is going well,” said Lipson. “People [who call] either have really well-written or badly written plans, but regardless, the education is not going well.” In other words, even a well-written plan is ineffective if it is not followed.

Lipson says that special education is often loaded with paperwork, which is usually used to document the student’s success. However, what matters to parents and students is the experience and quality of education in the classroom.

The Student’s Role as Self-advocate

The IEP process does not come without challenges. According to Lipson, one of the most prominent obstacles for students with disabilities and their parents, teachers, and school administrators is ableism. Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. This can take many forms, she says, such as a teacher having lower expectations regarding what is possible for students with disabilities.

“The truth is, we all live in an ableist society, and it is easy for us to unconsciously absorb a lot of those ideas,” explained Lipson. “We have to work hard to overcome ableist ideas in our daily lives, like the idea that intelligence is measured by a test, for example.”

A key way to prepare students for success is for students with disabilities to become self-advocates. Lipson believes it is important for students to participate in their IEP meetings, and she advises against being too narrow in terms of what this participation may entail. In working with students with disabilities, Lipson has seen various creative and impactful ways in which students have participated, such as utilizing PowerPoint presentations, doing pre-practiced interviews, explaining their school day, and drawing pictures.

“A lot of times people think a kid coming to their IEP meeting is enough,” says Lipson, “but kids really need prompting, coaching, and feedback on how to advocate for themselves. Being able to advocate for yourself is a lifelong skill.”

Because of how the IDEA is written, parents hold the educational rights for the student, which can limit a student’s capacity to hone their self-advocacy skills, cautions Lipson. It is important to frequently solicit the student’s participation thoughtfully and sensitively during this process. 

Another aspect of self-advocacy that is vital to the student’s success is persistence.

“You can train kids really young to help them figure out what they need, guide them to be brave enough to ask for what they need, and then teach them to be brave enough to ask again if they’re told no,” said Lipson. “We live in such a compliance culture. If I had my career based upon ‘I asked, and they told me no, and I didn’t ask again,’ I would be in a completely different career.”

The Georgia Council on Developmental Disabilities (GCDD) Equitable Dinner event, "A Seat at the Table: A Transformative Conversation Around Equity, Disability and Support" attracted capacity crowds for in-person and virtual sessions this past February. Presented by GCDD, Equitable Dinners, L'Arche Atlanta, and Out of Hand Theatre, these two gatherings brought together 175 Georgians with disabilities, their family members, community leaders, and disability advocates for a discussion about the value of equitable opportunities and supports in the lives of Georgians with developmental disabilities (DD) and their families and is the latest iteration of the GCDD Storytelling Project.

The Storytelling Project was created six years ago in a partnership between GCDD and L'Arche Atlanta to increase public awareness and motivate Georgia legislators to act now for this remarkably underserved community. By providing living portraits of individuals struggling to receive a life-altering benefit, the project aimed to expand cross-sector allies and garner voices of support outside of the DD community. Since its beginning in 2019, more than 170 stories have been shared via mini-documentary films, short films, creative prose, podcasts, written stories, and photographs.

GCDD's "Equitable Dinners: A Seat at the Table" was the first event produced by the Storytelling Project team, which partnered with the Equitable Dinners organization. This was also the first event in which Equitable Dinners focused on conversations around disability. Equitable Dinners excel at creating meaningful conversations and change around educational and racial disparity issues by combining art and dialogue and bringing people of diverse backgrounds together in a facilitated discussion about complex topics. The dinners are designed to help participants engage in conversation with depth, honesty, and mutual respect, and guests include community residents, leaders, and additional stakeholders. Previously, dinner discussions were prefaced by a one-person play that detailed the issue being discussed.

Participants viewed three short films that showcased people with disabilities from across the state. Aysha Virji, Kason Jackson, and his direct support professional (DSP) Joshua Hall shared their stories from Athens, and Chad and Kellie Roberts shared their family’s story from Canton. After screening the films, participants broke into small groups to discuss the issues addressed in the movies and how legislation, social systems, and community supports impact the lives of those living with disabilities in Georgia.

The first dinner in the series was held just before GCDD’s Waivers and Wages Advocacy Day, which hosted disability advocates to the state capitol to meet with their legislators to discuss Home and Community-Based Services waivers and the Direct Support Professional (DSP) crisis that impacts the ability to find and retain resources and support staff. This scheduling was intentionally done to bring the content and conversations from the dinner to the legislators who have the power to create change in these areas. Several Equitable Dinner participants attended the Advocacy Day and Storytelling managers plan to create more opportunities for the two work areas to collaborate.

GCDD Executive Director D'Arcy Robb stated, "These events have not only been a platform for conversations around these issues, but they have also brought in new community members and disability advocates who have not previously been a part of our programs. New voices can bring new ideas, and we are excited to have these fresh perspectives in these conversations."

Learn more about the Storytelling Project and Equitable Dinners. You can also view the three short films shown at the Equitable Dinners on GCDD’s YouTube channel.

On January 24, 2024, the Georgia Council on Developmental Disabilities (GCDD) hosted its annual Inclusive Post-Secondary Education (IPSE) Advocacy Day at the Georgia State Capitol. The event serves as an opportunity for students with intellectual disabilities (ID) to advocate to the General Assembly for state-supported funding for IPSE programs. There are nine active IPSE programs in Georgia, with an additional program opening in Rome, GA at Berry College.

IPSE supports individuals with ID in obtaining a post-secondary education and serves as a means for individuals with ID to learn and develop skills that can help them enter the workforce and live independently after college. Advocacy around the IPSE programs is to increase funding for the IPSE grants.

"This day is so amazing for our students because they get to tell their story," said Alexis Szelwach, Transition Coordinator for the University of Georgia’s (UGA) Destination Dawgs, which is UGA’s IPSE. "They get to tell their stories to other students in other IPSE programs, and they also get to tell their story to other representatives and senators to help them understand how much impact they can make for the lives of other students to come."

IPSE Advocacy Day is a special time for students with ID to have the opportunity to speak firsthand to their state representatives at the Georgia State Capitol about their time in the state’s IPSE colleges.

"The reason I love the IPSE program is because [UGA] gave me the opportunity to have an experience; I call it ‘an experience like a UGA kid,’" said Julia Nazarowski, a Destination Dawgs student. "It allowed me to become friends with my peer mentor, Liza Crane, and it allows me to meet people and advocate."

Advocacy is the lifeblood of IPSE. Many students who participate in GCDD’s IPSE Advocacy Day are passionate about their advocacy because it allows future generations of students to also benefit from IPSE programs.

"I think [IPSE programs are] important because they offer a great place to help everybody with disabilities to be their best selves and achieve their dreams," said Deriq Graves, a student in GSU’s Inclusive Digital Expression and Literacy (IDEAL) program. "I want [IDEAL] to be able to continue to do that for years to come."

The students’ advocacy serves as a driving force for the increased funding for IPSE programs because the programs offer a personal account of the quality of life for students with ID.

Peyton Ashcraft, a student from UGA’s Destination Dawg, and her mother, Lynn, came to Advocacy Days to lend their voices to the cause.

"It helps me to meet new staff, students, and helps me with some people that have disabilities [who] don’t know about the program," said Peyton. "[It helps build] confidence. You can do all the independent things like I’ve been doing and just don’t be nervous about it."

Program Directors Share their Passion for IPSE

Advocacy is also driven by school administrators, such as IPSE program directors and coordinators.

The IPSE program at Berry College is the first IPSE program at a private college in Georgia. Located in Rome, a city in northwest Georgia, the college, which is commuter-based, will provide education opportunities for students with ID in the immediate area, equipping them for a future of self-advocacy and independence. Michelle Haney, the Director of Berry College’s IPSE Program and the sole driver behind the program has worked for at least 10 years to bring IPSE to Berry College.

"Creating an IPSE program on the 27,000 acres of beautiful Berry College has been a dream of mine for many years- and now that dream is about to be realized! The Berry College community is so excited to welcome our first cohort of students to the Berry College Program for Inclusive Learning Fall 2024," said Haney. "Our IPSE program aligns with the Berry College mission, building on our founder Martha Berry’s vision of providing an education that allows individuals to learn skills and gain work experiences to become productive members of their communities."

"I know that we have a lot of support, not just from the students and faculty at the Berry College Program for Inclusive Learning, but also the community of Rome, Georgia," said Anne Bice, the IPSE Coordinator at Berry College. "We’re really excited to have another option available for students with disabilities."

The heart of the Berry College Program for Inclusive Learning is student work, student life, and making connections with people, whether it’s your peers or your professors, reflected Bice. "Our students will have internships and jobs on campus, where they will learn real-life skills. They will work with a peer mentor during their internships and learn valuable life skills to help them gain employment after graduation." she added.

Another director who is enthusiastic about IPSE and the students involved in it is Regina Watts, Director of the Leveraging Education for Advancement Program (LEAP) at Albany Technical College. Due to being housed at a technical college, LEAP offers unique education opportunities for prospective students with ID.

"Our students are finding academic success with the assistance of mentor tutors. Additionally, our students are engaged in life skills in general," explained Watts. "They’re engaged in independent living skills, socialization, and employability skills. Some of our students have come to us very shy, not believing in themselves, but after the very first semester, they are a different person in the sense that they believe in themselves."

Other IPSE programs in Georgia include the Kennesaw State University Academy for Inclusive Learning, East Georgia State College CHOICE, the EXCEL at Georgia Tech, the GOALS at Columbus State University, Destination Dawgs at the University of Georgia, the LEAP at Albany Technical College, Eagle Academy at Georgia Southern, GC Thrive at Georgia College and State University, and the IDEAL at Georgia State University.

Support from Legislators

State legislators also play a significant role in the advocacy process, particularly since they are responsible for passing bills to enact positive changes for the disability community.

The Berry College team met with Rep. Katie Dempsey (R – District 13), who is the Chairman of the Appropriations: Human Resources Subcommittee with the General Assembly. She is a huge supporter of IPSE programs in Georgia.

Watts emphasized the importance of advocacy by sharing her experience with meeting and discussing IPSE programs with Sen. Freddie Powell Sims (D – District 12) who represents her district.

"I am thoroughly excited because I did speak with my senator, Freddie Powell Sims, and she hadn’t heard of IPSE programs," said Watts. "But, she is elated now to know that Albany, which is her hometown, has the first technical college in the state to offer an IPSE program," said Watts. "She asked that I send something to her office so that she can take it to the appropriation to work on getting additional funding for other IPSE programs. It was well worth my while to deal with the Atlanta traffic!"

UGA students visited their friend and supporter, Rep. Houston Gaines (R – District 120). He is one such advocate for individuals with disabilities, whose work dates back to his time in college.

"It all started when I was in college at UGA. I was involved in our Student Government Association, and there were some folks a year or two older than me that had been really active in trying to bring an IPSE program to UGA," said Gaines. "I had the chance to work with them as we advocated to bring Destination Dawgs to the University of Georgia."

Rep. Gaines and his cohorts’ advocacy worked, and his senior year of college was the first year to have Destination Dawgs attend UGA. Now, working as a state representative, Gaines continues to champion IPSE programs. Last year, with the help of Rep. Gaines and advocates from IPSE Advocacy Day, the General Assembly passed a bill that allowed a state-supported IPSE scholarship to help make inclusive education programs more affordable.

"Ever since I got elected, I knew it was an opportunity to help a program that I’ve been involved with for years before I was elected," said Gaines. "Last year was the right year to do it. We started working on the legislation, and a lot of folks got involved and advocated for it and made sure that it happened. It was an incredible experience to be able to see that idea come to fruition."

The students from Kennesaw State University Academy for Inclusive Learning met with Rep. Scott Holcomb (D – District 81), to advocate for increased funding for IPSE. He was enthusiastic about their mission and encouraged them to continue speaking out.

"Advocacy is very important because when we have, maybe, a hundred different things being presented to us, and we’re trying to figure it out," said Holcomb. "And, most of what we do is just reading bills. And so by coming particularly in person, it brings the issues to life."

The Georgia Council on Developmental Disabilities’ (GCDD) public policy team has made tireless efforts to foster new relationships and educate legislators on the need for policy change that promotes opportunities for Georgians with developmental disabilities (DD) to live, learn, work, play, and worship in their communities – and it’s showing results.

This year, GCDD hosted three Advocacy Days. Advocacy Days encourage individuals from the intellectual (ID) or developmental disabilities (DD) community throughout Georgia to use their voices to advocate for their needs by coming to the state Capitol and speaking to their legislators directly. As a way to increase participation and to fully prepare advocates for their experience at the Capitol, each Advocacy Day during the 2024 session consisted of a virtual and an in-person day.

GCDD’s Legislative Advocacy Director, Charlie Miller, also piloted a partner event for Advocacy Days this year called “Navigate Before You Advocate.” This event allowed advocates to practice touring the Capitol and giving testimony before the legislative session started. While it was only open to a few participants this year, GCDD hopes to build on the success of “Navigate Before You Advocate” by making it more widely available before the 2025 session.

GCDD’s three Advocacy Days focused on inclusive post-secondary education (IPSE), waivers and wages, and employment.

Inclusive Post-Secondary Education (IPSE)

Our first Advocacy Day, which took place in January, centered on IPSE inclusive college programs that offer a variety of experiences and opportunities for growth as students with ID prepare for the next chapter of their lives. IPSE students participate in the same classes, clubs, residences, and athletics as students at nine (soon to be ten!) Georgia colleges and universities.

Yet tuition and program-specific costs remain challenging, as IPSE students do not qualify for HOPE scholarships. Last year, this challenge was addressed with the passage of HB 185. This bill, sponsored by Representative Houston Gaines, created IPSE grants that cover standard tuition and fees for students in these programs. However, the legislature only provided enough funding to cover the standard tuition for these programs, leaving many students to cover the disproportionately high cost of program fees (which vary widely depending on the IPSE program).

Our main advocacy goal for IPSE Advocacy Day, therefore, was for an additional $1,644,170 in the Georgia Student Finance Commission’s Budget for IPSE Grants to fund tuition fully and required IPSE program fees for students. To achieve this goal, GCDD advocated for $2.6 million in total IPSE grants.

Results: The IPSE Advocacy Day had dozens of attendees from seven schools. The legislature included the entire requested amount in their final budget. This means that this fall, IPSE students will be able to apply for grants that cover the full cost of their tuition and program fees, making an inclusive collegiate experience accessible for more Georgians with ID.

Increased Waivers and Wages

On the second Advocacy Day, which was in February, GCDD focused on increasing home and community-based services (HCBS) waivers and direct support professional (DSP) wages. In Georgia, there are two HCBS waivers: NOW (New Option Waiver) and COMP (Comprehensive Support Waiver). These waivers provide support for Georgians with DD to live and work in their communities. Historically, there has been underinvestment in these programs, leading to a waitlist of over 7,300 individuals who need and qualify for these services.

Additionally, DSPs who provide crucial day-to-day support for Georgians with DD have long been underpaid. This has led to increased turnover rates and workforce shortages, with many providers unable to meet the high demand for support professionals. Fortunately, the Department of Behavioral Health and Developmental Disabilities (DBHDD) completed a comprehensive rate study last year, increasing the average pay rate for DSPs from roughly $10.00 per hour to roughly $16.00 per hour. To make this pay increase a reality, the legislature must fund the rate study by including $107 million in the state budget.

Georgians with DD need NOW/COMP waivers to live autonomous lives, and the DSPs who aid them need livable wages. Therefore, during GCDD’s Waivers and Wages Advocacy Day, participants advocated for:

1. Funding 2,400 additional NOW/COMP waivers for a total cost of $65 million in FY 2025 budget (2,400 is the number of waivers suggested by a Senate Study Committee in 2022).
2. Support the Governor’s and DBHDD’s commitment to fully funding the rate study ($79 million from the Governor’s Budget, $28 million from DBHDD for a total of $107 million).
3. Create an innovation commission for people with intellectual and developmental disabilities (I/DD) to further study how Georgia can best invest in its I/DD community.

Results: Unfortunately, the legislature only allocated enough funding for 100 new waivers in the FY25 budget. This means the waitlist will remain above 7,000 individuals for at least the next year. Fortunately, however, the legislature fully funded the rate study, this means that DBHDD will be able to propose these new rates to the Center for Medicare and Medicaid Services (CMS) and the Department of Community Health (DCH) for approval, and, once approved, DSPs will see a pay increase. The proposal to create an I/DD Innovation Commission received pushback in the House, with legislators contending that the work appeared redundant. Unfortunately, the House tabled.

Employment

GCDD’s final Advocacy Day, which took place in March, centered on employment, more specifically, advocating for Georgia as a Model Employer (GAME) and ending subminimum wage for people with DD. This year, two exciting pieces of legislation were introduced to achieve these goals. Senate Bill384, sponsored by Senator Billy Hickman (R – District 4), would create the GAME program, to encourage the recruitment, hiring, and retention of employees with disabilities at state agencies. HB 1125, sponsored by Representative Sharon Cooper (R – District 45), would phase out the use of subminimum wages for workers with DD. Georgia’s disability community is an underutilized talent pool and Georgians with DD want real jobs and deserve real wages.

Results: SB 384 was passed with approved amendments, while the senate read HB 1125 a second time.

My Experience as GCDD’s Public Policy and Advocacy Fellow: This experience has come full circle for me. I’m from Georgia, grew up in Georgia. And after taking classes in state politics and doing mock legislatures, I get to take part in actual disability policy in the state. Every day is different and exciting. I get to work with people just as dedicated as I am to disability rights.

Other Important Legislation Observed During Session

Along with the Advocacy Days and the bills we advocated for our representatives to support, here are some additional pieces of legislation that we observed during the session:

1. HB 1078, Department of Community Health, Georgia Program of All-Inclusive Care for the Elderly (PACE). This gives permission to the Department of Community Health to create and implement a program to manage state-funded, all-inclusive care for the elderly. This bill was passed and adopted in the Senate.
2. SB 198, Georgians with Intellectual and Developmental Disabilities Innovation Commission, would establish a Georgians with Intellectual and Developmental Disabilities Innovation Commission to enable long-term planning of services for the disabled community. This legislation, however, was tabled in the House.

My Experience as GCDD’s Public Policy and Advocacy Fellow: I loved it! Meeting individual advocates and family advocates statewide. Seeing state policy enacted in real time. Lamenting the lack of coffee and vending machines in the Coverdell Legislative Office Building. This was a dream for me since trying a mock state legislature in college. People are nice in the capitol, legislators and state employees alike.

Moving Forward

We at GCDD are generally elated with this session’s strides toward inclusion and equity for those in the DD community. Due to the hard work and dedication of the GCDD public policy team, the representatives who supported our causes, the advocates who gave their all during our advocacy days, and many others, we made significant progress during this session.

With that said, there are still more issues that need to be advocated for, and problems that need legislative solutions. To ensure we keep with this momentum, here are some steps we all can take to continue our advocacy during the legislative off-season:

1. Attend state agency board meetings to learn how to be involved all year.
2. Stay connected with your representatives (find your representative here) and the Governor’s office via email or phone and continue to inform them about important issues that impact the ID and DD community.
3. Lastly, make sure you stay connected with us at GCDD through our website, email, and all of our social media platforms to learn of additional off-season advocacy opportunities.

Until the next session, we applaud you for continuing to create and share space for education, advocacy and connection. Our teamwork and love for this community gives us the momentum and strength to keep moving forward. Together we have made some amazing progress, but many obstacles remain to overcome. Thanks to your hard work, sacrifices of time, and effective advocacy, we can and will influence more positive change with, and on behalf of Georgia’s ID and DD community.

The Georgia Council on Developmental Disabilities (GCDD) hosted its annual Advocacy Days at the Capitol during the 2024 legislative session, which began in January. Using the power of self-advocates from Uniting for Change, GCDD was able to educate and inform lawmakers on issues affecting the developmental disability (DD) community throughout Georgia. 

GCDD hosts three separate Advocacy Days each year during the Georgia legislative session, IPSE Day, Waivers and Wages Day, and Employment Day. IPSE Day focuses on advocating to increase funds for IPSE grants. Waivers and wages day address the 7,000 Medicaid waitlist, as well as wages for direct support professionals (DSPs) in Georgia. Employment Day focuses on ending the 14c certificate, which makes it legal to pay people with disabilities subminimum wages and making Georgia a State as a Model Employer state. 

This feature highlights self-advocates from across the state of Georgia and their experiences advocating at the capitol during each of the three Advocacy Days.

IPSE Day

Inclusive Post Secondary Education (IPSE) is the first of GCDD’s Advocacy Days each year. This year, self-advocates went to the Capitol to ask their state legislators to fully fund the Inclusive Post-Secondary Education (IPSE) grants and to make sure that all Georgians with intellectual disabilities (ID) have the opportunity to attend the IPSE college program of their choice. 

Below are personal testimonies of a few self-advocates, who are students representing several of the different IPSE programs in Georgia, on why and what they advocated for this legislative session to support the success of their IPSE program. 

Griffin Hatcher, EXCEL at the Georgia Institute of Technology“We came for Advocacy Day with my EXCEL family. We are trying to make a difference in our community and we’re trying to get our voices heard. That doesn’t matter because of our disability, we can still advocate and we have the same intuition like everyone else does, and we’re just trying to get the word out. We can get jobs, we can live the way we want, and we want to let everyone know that.”

Derek Bree, IDEAL at Georgia State University

“I’m learning different things with film and media, like writing and acting, and a little bit of directing. I am at the Capitol today to advocate for the IDEAL program so they can get all the help they need to continue to strive. It’s a great, great place to help everybody with disabilities to easily be their best self and achieve their dreams, and I wanted them to be able to continue to do that for years to come. 

By being at the Capitol, it’s helped me by being able to talk about things with different high ranking folks and different positions of authority. I am passionate about advocating for different folks with disabilities, for them to get a chance to thrive and be their best self and live their best life.” 

Peyton Ashcraft, Destination Dawgs at the University of Georgia 

“So I’m in Destination Dawgs and it’s my favorite program in the whole wide world. I met new friends because of it. It helps [people with disabilities] meet and socialize with people, and we meet new people too. We can bring new friends over there to be a part of the program and then it helps with all the disabilities.”

Waivers and Wages Day

Self-advocates went to the Capitol to talk to their state representatives about reducing the Medicaid waitlist and increasing wages for Direct Support Professionals (DSPs). 

Nandi Isaac, a longtime self-advocate and GCDD Council Member, is a member of Uniting For Change. She’s lost count of how many times she’s been at the Capitol advocating on behalf of people with disabilities, but her work isn’t finished. She attended these advocacy days to talk about DSP wages. While Isaac lives independently, her daily life relies heavily on the support of DSPs. 

“I want to talk to my lawmakers about the DSP shortages and waivers. It is important because right now there are [DSP shortages] and there is less pay for them. It is really hard with their lives, and they can’t do everything,” said Isaac, who is from Macon. 

While at the Capitol, Isaac also reflected and remembered GCDD’s former public policy director, Dawn Alford, who was a force in disability advocacy and led Advocacy Days when GCDD first began hosting Advocacy Days.

Kristian Sherman, from Albany, attended his first-ever Advocacy Day this year to advocate for waivers and wages. 

“It was an important day for me to attend so I could show support to my fellow community,” said Sherman. 

While he himself does not have a waiver, he feels reducing the waitlist and providing waivers for the disability community is important because, “it allows us to become more independent in our community.”

Additionally, Sherman was advocating for increasing wages for DSPs. “People working outside of the DSP community get paid fairly, and we should have no more discrimination against DSPs.” He does not have a DSP.

While he was not able to meet his state representative, Sherman wants to make sure that Georgia lawmakers know one simple message: “We may be disabled, but we work just as hard and are dependable. So the waivers give opportunities for fairness,” he shared.

Employment Day

Self-advocates came to the Capitol to support Georgia as a Model Employer (Senate Bill 384) and to support ending 14c (House Bill 1125), the outdated practice that allows employers at community rehabilitation programs to pay people with disabilities less than minimum wage.

LJ Young, a self-advocate with Uniting for Change, shared why he was at the Capitol to advocate for the ending of 14(c) subminimum wage, allowing people with disabilities to earn competitive wages. 

“We are the only marginalized group that is being paid under minimum wage and it should be illegal. Just like it’s illegal to discriminate based on race, sex, disability, it should be illegal to be paid [under] minimum wage just because you have a disability,” said Young. 

Young said that being in a career and not just a job is very important because people want something to be motivated, to push themselves to be more. 

“We want to be number one in the country for employers to be hiring people with disabilities,” said Young. “That is my goal. I want us to be number one. I want us to be above California, above New York, above all these other states that have already implemented this probably for 10, 15 years. If we can jump them, I could brag about it to my friends. I’d be like, we’re number one.”

Uniting for Change is a statewide, grassroots network of self-advocates, allies, and supporters in Georgia that was founded in 2019 through a grant from Georgia Council on Developmental Disabilities. This network is committed to advocating, organizing, showing up and being heard. Uniting for Change members seek to share information, create opportunities and influence change. www.uniting4change.org