Spring 2023

“My daughter was born with profound disabilities. I didn't know anything about anything at that point. And I found early on that the people from that I learned things from, and I needed to learn a lot were other parents. And I so appreciated that resource. Whenever I learned something, I wanted to share it with others. I like the feeling I get from helping other families, but I also like sharing what I learn so that they can experience the same results that I got from those things,” says Addams about her experience as a parent of a child with a developmental disability.

Those resources can be found at Parent 2 Parent of Georgia (P2P). The statewide organization provides support, information, and training to families in Georgia who are impacted by disabilities or special healthcare needs. It is the parent training and information center for Georgia, which is funded by a federal grant that requires it to provide those services to families who have children from birth to 26.

In addition, its Family-to-Family Healthcare Center for Georgia is also funded by a federal grant related to healthcare services for children. And P2P is the central directory for Babies Can't Wait, which is its database of 7,000 providers.

“You can call us, and a coordinator will match you with a service. Let's say, for example, that you're looking for a physical therapist in Statesboro. They will do a search, and they will find you a list of physical therapists there,” says Addams. “The other way that parents can use the database is by going on our website and actually do the search themselves. I think it's a  wonderful resource because many parents are thinking about these things at 10 o'clock at night, and they can go there and search themselves.”

Parent 2 Parent also has trainings, including webinars on the website. Families can go there and look for a particular topic. There are different trainings to support parents at different stages and needs. They range on everything from how to get along with an IEP team to what is a waiver or what is Medicaid.

One of the goals for Parent 2 Parent is to help parents first understand their rights and their child's rights and then how to work with the system to get what their child needs.

“Oftentimes, parents don't really understand what they should expect. Sometimes they expect too much and sometimes, they don't expect enough. And we want them to know what expectation they can achieve with their child,” Addams says.

One of the projects hosted by Parent 2 Parent is called The Navigator Project. Through that project, the organization works within communities to train families and lead families into doing things within their community, to take on leadership roles in their community to advocate for their children and for others with disabilities.

“One of the things that we encourage all of our families to do is to take control of their situation. We provide them with resources and information and training, but the individual parent or the individual with the disability needs to learn how to advocate for themselves and to get the things that they need,” said Addams. “For example, I think that it's important for children to understand their diagnosis as much as they can as early as possible and then understand the services that they might be receiving at school. I think they should attend IEP meetings once they're in middle school and understand the process, why they're there, and how this is supposed to help them.”

While it aims to serve parents, the organization also has several ways that it tries to reach out to youth. One is through a health transition training done in cooperation with the Department of Public Health, which it hosts a workshop-type training for young people who are preparing them to transition from pediatric to adult healthcare services.

The organization also helps to prepare the youth and their parents for the transition from high school. It provides resources on the process of transition to employment and the services that are available to them, or the lack of services that are available to [young adults], in preparing them for the job market; and then there's college or some post-secondary education.

Equally important is that Parent 2 Parent intentionally tries to reach diverse families in the state – racially and ethnically diverse cultures.

“We have a large metro Hispanic support group. And we have a smaller but still very active East African support group. And we have bilingual staff — who speaks Spanish — and then we have another staff member who speaks Farsi. We actively seek out staff to serve families of other cultures,” said Addams.

“When I think of the work at Parent 2 Parent Georgia, I hope that [parents] come away having learned something that will help their family,  and that it gives them some comfort and some feeling of control to have that information,” she adds.

For more information about Parent 2 Parent Georgia contact: https://www.p2pga.org/ or call 770-451-5484 or 1- 800-229-2038.
To learn more about Parent 2 Parent Georgia’s services, watch this video:

With approximately 25% of the representatives being new legislators during this session, a significant portion of the Georgia Council on Developmental Disabilities (GCDD) public policy work focused on making new relationships and educating new legislators on the need for policy change that promotes opportunities for Georgians with developmental disabilities to live, learn, work, play, and worship in their communities.

As seen in previous legislative sessions, GCDD’s Advocacy Days was an integral program allowing individuals from the ID/DD community throughout Georgia to use their voices to advocate for their needs. As a way to increase participation, each Advocacy Day during the 2023 session consisted of a virtual day and an in-person day for advocates. The Advocacy Days' virtual and in-person aspects consisted of education around identifying, contacting, and connecting with Georgia’s representatives via email, office visits, or meeting them at the ropes at the Georgia State Capitol.

GCDD’s three Advocacy Days focused on the following topics:

Inclusive Post-Secondary Education (IPSE)

Our first Advocacy Day centered on inclusive post-secondary education (IPSE), which allows students with intellectual disabilities to attend college with their peers who may or may not have a disability. They participate in the same classes, same clubs, same residences, and same athletics as students who may not have an intellectual disability. 

During our IPSE Advocacy Day, our most significant legislative push was for advocates to ask for their representatives to support HB-185, which Representative Houston Gaines sponsored. HB-185 would supply grant-based financial support to those with intellectual disabilities to cover tuition and fees at a Georgia college with an IPSE program. Currently, only nine Georgia colleges have an active IPSE program. Therefore, future advocacy will focus on expanding IPSE programs within Georgia colleges.

Results:

An unforeseen setback did prevent HB-185 from passing through the House. However, with Representative Houston Gaines and the public policy team's quick work, we got the bill's language included in SB-246, which was passed. Therefore, over $955,000 has been allocated in this year's state budget to allow for students with intellectual disabilities to receive ISPE-based grants so they can attend one of the nine ISPE programs available in Georgia. Furthermore, an additional $200,000 was approved to support IPSE programs.

Increased Waivers and Wages

On the second Advocacy Day, GCDD focused on increasing waivers and wages. Our advocacy for increased waivers and wages focused on NOW/COMP waivers, providing support for Georgians with disabilities to live in their communities. NOW stands for New Option Waiver program and COMP stands for Comprehensive Support Waiver program. Currently, approximately 226,000 caregiving families support someone with ID/DD in Georgia. This accounts for 6% of all Georgia households. There is a high bar to be eligible for NOW or COMP, and only a limited number of Georgians with ID/DD qualify. However, over 7,000 Georgians with ID/DD are not receiving the necessary support to live with dignity in the community.

There is a critical need to invest in NOW/COMP waivers and livable wages for the Direct Support Professionals (DSPs) that support them. Therefore, during Advocacy Day two, participants were tasked with talking to their representatives about the following: 

1. Funding approximately 2,400 additional NOW/COMP waivers for$46 million in FY 2024 budget. 
2. Raising wages for DSPs to $22.48 an hour in the FY 2024 budget. 

3. Ensuring the creation and funding of a two to five-year plan to fully fund the waiver waiting list. Create the ID/DD Home and Community Based Services (HCBS) Commission on Reform and Innovation

Results:

With the passing of HB-19, there was a slight increase in wages for DSPs to a little over $17 an hour. It was not the increase that we wanted but was a move in the right direction. Furthermore, an additional 500 waivers were included in this year's budget. With last year's 513 waivers and this year's additional 500 waivers, Georgia is starting to make progress regarding adequate care for the ID/DD community.

Advancing Employment First and Ending Subminimum Wage

Our last and final Advocacy Day centered on advancing Employment First and ending subminimum wage for those with ID/DD. Advocates were tasked with emailing or having an in-person meeting with their state representative to strengthen Employment First options and end subminimum wage practices. Georgians with ID/DD want real jobs and deserve real wages. 

This is why advocates asked for their representative’s support on the following bills:

1. HR-168: This bill would reignite the Georgia Employment First Council. Georgia's Employment First Council would develop recommendations to phase out Georgia's use of subminimum wages for workers with ID/DD. The Council would also encourage and promote competitive integrated employment (CIE) options.

1. SB-198: This bill would create the Georgians with Intellectual and Developmental Disabilities Innovation Commission. This commission would prioritize employment to meet the 54% of people with ID/DD who want a job but don't have one.

Results:

Unfortunately, neither bill passed through the House or Senate. However, our advocacy for advancing Employment First and ending subminimum wage continues. We at GCDD are dedicated to pushing for equal pay and employment for those in the ID/DD community.

Other Important Legislation Observed During Session:

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

1. SB 140: (Passed) This bill prevents healthcare providers from offering any type of sex reassignment surgeries, surgical procedures, or hormone replacement therapy to minors (those under 18 years old). We wanted to keep tabs on this bill because “developmental conditions and the autism spectrum disorder” is directly mentioned. Therefore, moving forward, we want to brace for any latent functions of its passing. 

1. SB 84: (Passed) This bill is also called the "Georgia Uniform Securities Act of 2008” and provides financial protection to disabled and elder adults from possible financial exploitation. 

Legislation to watch in the 2024 session:

The following bills didn’t pass during this legislative session, but we want to monitor for the 2024 session.

1. SB 4: Also known as the "Blind Persons' Braille Literacy Rights and Education Act," this bill would require elementary and secondary education programs to conduct evaluations to determine and meet the additional needs of blind and visually impaired students to promote academic success. 

1. HB 122: This bill is related to the higher education savings plan and Georgia Achieving A Better Life Experience (ABLE), and would provide for the governance of the Georgia ABLE program by the Georgia Higher Education Savings Plan’s board of directors. Although this bill isn’t focused on the ID/DD community specifically, it could lead to cost-effective tuition on IPSE programs, which may allow for more students admitted into IPSE programs.
2. HB 520: GCDD monitored HB 520, which was a continuation of the work of the Behavioral Health Reform and Innovation Commission. The work began last year with the passage of HB 1013. HB 520 contained many provisions to improve mental healthcare in Georgia, such as funding targeted studies, supportive housing programs, and expanding student loan forgiveness programs for mental health providers. Some provisions were specifically related to the definition and treatment of autism spectrum disorder, which is particularly relevant for the disability community. HB 520 passed the House almost unanimously, but certain sections faced scrutiny in the Senate. The final Senate version cut approximately 25% of the bill, reducing it from 44 pages to 31. Ultimately, HB 520 was never called for a full Senate vote due to the delays and opposition in the committee. But, HB 520 will still be viable next year and GCDD will continue to monitor it then.

Moving Forward

We at GCDD and the Department of Behavioral Health and Developmental Disabilities (DBHDD) are elated with this session’s strides toward inclusion and equity for those in the ID/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 round.
2. Please stay connected with your representatives (find your rep. here) and the Governor’s office via email or phone, and continue to inform them about important issues that impact the ID/DD community. That way, we can start to influence the next budget. 
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 encourage you to continue to create and share space for education, advocacy and connection. Our teamwork and love for this community give us the momentum and strength to keep moving forward. We have made some amazing progress, but many obstacles remain to overcome. With continued advocacy, we will influence more positive change with, and on behalf of Georgia’s beloved ID/DD community. 

And this year, I have had the pleasure and opportunity to be at Advocacy Days as the new Executive Director of GCDD. 

One of the great privileges of being a DD council is we're charged with advocacy system change and capacity building. And we do a lot of that in our advocacy, which we try to involve everybody who wants to be involved. 

And for GCDD holding this annual event, we're making connections or supporting the connection between citizens and legislators. 

I think this is magical.

The three Advocacy Days GCDD hosted this year were fantastic. We found that legislators hear from many professional advocates and lobbyists, and especially during the session, it's not as often that they get face-to-face with their constituents. And our community always does a great job of turning up and having those conversations. We have heard really great feedback from advocates and we have heard great feedback from legislators.

Even though GCDD’s Advocacy Days are over, our advocacy is not done. There are a lot of ways to stay engaged the remainder of this year, and people must do.

Make sure that you are signed up for our email alerts and connected into our network. One way is through GCDD’s system called Capitol Canary. Sign up, put in your address, and it will automatically populate with your state representatives. There is an email template there; you can either send the email as is or personalize it. We got a lot of feedback from legislators that they got hundreds of emails collectively last year, and that was a big reason for the 513 waivers.

You can also use social media to advocate. We post things on our social media channels all the time. And if you do not have access to social media, you can always pick up the phone and call your state representative. 

We always recommend getting to know your legislators in the off-season. It's a little calmer, and they are in the community. They live near you or they wouldn't be your legislator. Just working those individual relationships, writing them independently, and saying, "Hey, I'm your constituent. I want you to know seeing more waivers and higher wages for direct support professionals (DSPs) is very important to me, and here's why." Or "I really want you to support scholarships for Inclusive Post-Secondary Education (IPSE) students, and here's why." 

I feel incredibly lucky to be in this role. Additionally, as Executive Director, I get to be still involved in policy efforts like Advocacy Days and get to help oversee things and shape things and be involved in so many really important efforts and conversations within the disability community and space. I get to learn from so many people.

My mom was a teacher, and I think something that she said to me once was really wise. She said, "The leader sets the tone." 

It's an incredible privilege that I have to be able just to set the tone for GCDD and be part of setting the tone for the disability community in Georgia.

D’Arcy Robb
Executive Director, GCDD

Supported Decision-Making is a way for people with disabilities to have control over their lives. People of all ages, all races, all abilities and all socioeconomic levels get support when they are making decisions. Think about an important decision you recently made. Think about what it was about and who you talked to when you needed more information or just wanted to bounce around alternatives. The idea of Supported Decision-Making for people with disabilities is to formalize that same process.

The most important aspect of Supported Decision-Making is that the person with a disability decides the areas and types of help they need. Decisions are not made for them; they are made by them. 

Supported Decision-Making enables a person with a disability to make their own decisions with assistance from a network of supporters. Supporters can help people understand information, issues and choices. They can help focus attention and weigh options. They can help interpret and communicate decisions to others. 

To be successful, a supporter must be person-centered. Supporters should understand how the person learns and communicates. They should also understand their role in finding, sharing, and helping the person process meaningful information.  And they should be chosen by the person being supported, and they should know them well.

There are many reasons to use Supported Decision-Making.  It is a process that helps people with disabilities achieve self-determination.  People with greater self-determination are more independent, more integrated into their communities, healthier, and better able to recognize and resist abuse. Supported Decision-Making plans can be used in place of guardianship. Georgia law says guardianship should be a last resort, but it is often not.  People who do not have a guardian are more likely to have a job, live independently, have friends other than staff or family, go on dates, socialize in the community, and practice the religion of their choice.

In Georgia, we use the acronym DECIDE to describe or define the elements of Supported Decision-Making. It stands for, “Direct. Enlist. Choose. Inform. Determine. Experience.”  To illustrate how this works, I want to share an important recent decision I made.

I have been involved in self-advocacy for years.  My work has included both professional and volunteer elements, including professional presentations, a SARTAC fellowship, published articles, and lectures at conferences such as the National Guardianship Association and TASH.  My volunteer work includes being part of the Uniting for Change leadership collective, expanding self-advocacy and voting rights, and working with students and youth groups on disability awareness. 

But during the pandemic lockdown, I began getting sick. My brain seemed to be breaking down and my body was losing function. I was unable to perform most tasks. I won’t go into all the details, but my professional and volunteer work stopped. 

My recovery has been very long and slow. The intense treatments are tapering, and I can now do and enjoy many of my former activities. Recently, I was presented with an opportunity to attend a disability leadership conference in Washington, D.C., and I had to decide if I was ready to go. I decided to consult with some supporters. I didn’t want it to beot my mom who I knew didn’t think I was ready. So, I thought about the context of my uncertainty. It was both professional and medical. 

Professionally, my strongest support was my partner at the Georgia Advocacy Office, so I met with them to discuss the pros and cons of going. Medically, I relied on a team of doctors and consulted with them to weigh my decision. Everyone got on board with a support plan I thought could work, and with that plan in place, I decided to go.  

Even though I had reservations initially, my supporters helped me consider all the variables and identify possible pitfalls to establish a support plan.  My decisions aren’t always complex, but I often discuss what’s on my mind with family and other supporters when I feel like it will be helpful.

- John McCarty

_________________________

My journey into Supported Decision-Making began when I was awarded the NOW Medicaid Waiver in the summer of 2019. It allowed me to contract that next year with a community guide who led my team of supporters and me through the Person-Centered Planning (PCP) process. My family and I had been aware of the process for years but had not yet undertaken the training and framework.

My community guide was a highly-regarded advocate in the local disability community and my team was comprised of members I hand-picked: my mom, my older sister, and a friend who was next in line to be my primary supporter if my two family members were unable to continue doing so. I also chose my dearest aunt, who is a retired special education coordinator in our local public school district, my direct work supervisor, my former high school teacher who was also my group leader at church, and three of my paid support staff, who had been family friends for years (one of whom was my beloved tennis coach). I expect that most of these individuals will be involved in my life to some degree from now on.

The ten of us got busy over the next many months in 2020 and, as the pandemic wore on, we met regularly through video conferencing. We mapped out my vision for the rest of my life, both personally and professionally, which included driving a car, living independently, dating, being married and having children, and continuing to discover my future dream job.

The following year, my mom, sister, and I were introduced to Supported Decision-Making by leaders in the Georgia Advocacy Office and our long-time connection, the Georgia Council on Developmental Disabilities. Supported Decision-Making seemed to be a natural progression from PCP. Once again, we enlisted the services of our same community guide and team members and resumed our regular virtual meetings. We soon identified that my dreams were similar to my neurotypical peers, and many of those dreams were attainable with support. We further recognized that people of all abilities are not truly independent but rather interdependent on others, particularly when considering important life choices. Something as simple as buying a car is often a supported decision.

As we went from 2021 to 2022, I realized my goal was to get and maintain meaningful employment over the next four years, but I also acknowledged that specific jobs would likely come and go as I worked toward my dream job. We talked of dating, driving (even a golf cart in the neighborhood) and living away from my birth family. To that end, we researched and discovered several viable residential options including Better Living Together, Inspiritus, Microlife Institute and Two Sparrows Village.

As the reality of navigating adulthood continues, I recently joked to my mom, “I’d like to move out when I’m 50 (years old).”  I’ll be 28 this summer. 

Decision-making is a learned skill, and people with disabilities can learn to make their own decisions and make those decisions with support. Though situations and people will look different, supporters who presume competence in the person with a disability can help that person achieve independence. That is the goal of Supported Decision-Making.

- Hannah Hibben

For more information, please go to idecidega.org.

I also helped to advocate for the closing of the institutions in Georgia. I am a public speaker and I am proud to be a part of Uniting For Change. I have been a part of the leadership collective since the beginning, helping create the group's mission, vision, and guiding principles.

Today, I would like to discuss the relationships with people that receive supports and their allies/supporters and Direct Support Professionals (DSPs). Many times, people with disabilities are lonely and isolated. The DSPs come and help people with learning how to get out there and make friends. They often get close. DSPs often talk to people with disabilities in ways that can help people to be better. They tend to communicate more and help people with disabilities form relationships and make friends in ways different from a regular friend.

People supports and DSPs are very important to the disability community because they are teaching and helping as they take time. Some people don’t take the time, but DSPs do help and take the time to do things like speak up and even pay a bill. They want to be called normal and not be labeled and you can’t blame them for that. Any question that you ask of a person, they can answer. People with disabilities need to be there with their DSPs to talk about all things about their supports, like transportation, wages, waivers, affordable housing, employment, end the subminimum wage and marriage penalty. We must be at the table. We need to increase the pay of direct support professionals.

They are important to the disability realm and help with all things people in the disability community need to strive for excellence. I am also advocating that the state unlocks the waiting list. Uniting for Change will be here to keep fighting for all people. 

This was the speech I gave during a press conference at the Capitol for Advocacy Day on February 16, 2023. I was asked to share my story by Senators Sally Harrell and John Albers. I believe that this work is about creating relationships and partnerships with providers, state agencies, legislators, and the community. Uniting for Change is looking forward to teaching and advocating for the HCBS Settings Rule so that all self-advocates can live their life of choice by partnering with all. 

Mira Patel, who works for the DeKalb Community Service Board is a sibling advocate. Her brother Rahul has a developmental disability. Patel says being a sibling advocate has shaped her life and that she has worked in disability services since 2015.

“I love working in this field. I started off just trying to help my brother. I can relate to people who need these services,” said Patel. “A sibling is just as affected as a parent, but people don’t realize that. Siblings, I think may have more role of a parent because you are a sibling for life. It’s a lifetime commitment.”

Kelly Parry, who works for the Department of Behavioral Health and Developmental Disabilities (DBHDD), is also a sibling advocate for her brother Jack who has a developmental disability. Parry said her brother has high support needs, and for the level of care he gets, she and her family have to fight to be aware of policy and funding changes, so he does not lose those services.

“With his disability, my brother relies on the advocacy of his community,” said Parry. “Those who don’t have the time or flexibility to represent themselves, I try to occupy so when important decisions are made, I try to keep in mind those with high support needs.”

The Georgia Sibling Connection is a group that provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote issues important to them and their entire families. The Sibling Leadership Network provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and promote the issues important to them and their families. The purpose of the Sibling Leadership Network is to promote a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan, enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families.

Sibling advocate Angela West Brown has a sister, Dominique, with a developmental disability. West Brown wrote the book Lost and Found to chronicle her family's journey as they tried to navigate the world of feeling lost, pain and confusion when it came to figuring out the best way to help her sister as she stepped into young adulthood. West Brown works with siblings of individuals with disabilities, Autism Speaks, Parent to Parent GA, The Sibling Leadership Network, Sibling Transformation Project and DreamAble Expert Presenter with Workshop Abilities, and more.

“I have been an advocate for over 5 years.  I advocate for early preparation, education, and awareness of transition planning and the intricate process of developing a successful transition into adulthood for young adults with intellectual developmental disabilities for parents who are new to the process,” said West Brown.

Parry said she is doing all she can to bring siblings together because she loves being in a community with other siblings of individuals with developmental disabilities and creating spaces to help build that community. 

“My parents took on everything for my brother Jack to create a quality life. I have seen improvements in the system but would like to see more interconnected needs and examples of individuals with developmental disabilities living more holistically,” said Parry. “Siblings have an opportunity to be a natural support because they provide a different perspective. I’m in partnership with you as your sibling. Independence for my brother will always include an aide,” she explained.

“National Siblings Day is important because siblings are a lifetime companion,” said Patel who is also involved with the Sibling Transformation Project. “We may not always agree, and I had to grow up fast, but I am glad I have my brother in my life. National Siblings Day needs to be acknowledged and recognized.”

West Brown works as an Individualized Education Planning Transition Coach (IEP) where she assists parents with children who are in transition from childhood to adulthood.

“When working with parents along this special education journey, I’ve learned that parents just want to know that they’ve done something right. As a sibling, I give a dynamic perspective to their experience. A cheat sheet if you will, helping parents to create a realistic plan for the future, designed with their child in mind, from a familiar voice (the sibling perspective) is refreshing and reassuring,” said West Brown. “National Sibling Day is important because it is a day to show the world a glimpse into the treasures of our hearts and our love for our sisters and brothers 365 days a year.”  

GCDD’s Council Chair Nick Perry, Executive Director D’Arcy Robb, and Public Policy Fellow Aaron Quick are all sibling advocates. For more information on becoming a sibling advocate, visit siblingleadership.org, Georgia Sibling Connection, or siblingtransformation.org. 

Heumann’s advocacy spirit was ignited by her parents, who fought for her access to quality education. That spirit became her advocacy voice as she gained awareness of the greater disabled experience alongside other young adults with disabilities while spending summers at Camp Jened. The 2020 Oscar-nominated documentary Crip Camp features Camp Jened campers, Heumann and other campers who she would work alongside as disability rights activists throughout her life. 

Heumann spoke out against discrimination and exclusion when she was once again deemed a fire hazard when she applied for a teaching position with the New York City Board of Education. The court ruled in her favor, and she became the first teacher in the state of New York who was a wheelchair user. 

Heumann’s fights led to wins for many others besides herself. She spoke out against injustices in access to employment, education, and community living and was not afraid to put her voice and body on the line to make change happen. Her domestic disability rights policy work on the Individuals with Disabilities Education Act, Section 504 of the Rehabilitation Act of 1973 work on the Individuals with Disabilities Education Act, and internationally in her work with the World Bank and the US State Department changed how others viewed people with disabilities and drafted a policy that impacted their lives. 

Her legacy lives on in global disability policy and in the hearts of those who knew and knew of her. Members of Georgia’s disability community shared their memories of Heumann and what she meant to them.

Kayla Rodriguez, Former Georgia Council on Developmental Disabilities (GCDD) Intern and Disability Advocate 

Judy Heumman was the definition of a trailblazer. She was often called the mother of the disability rights movement and for a good reason. She and many others created the disability rights movement as we know it today, and the movement wouldn't have been the same without her contributions. I was lucky to meet Judy back in October 2019 when I was an intern for GCDD. Judy will surely be missed, and we will continue the disability rights movement in her honor.

Brittany Curry Graphic Facilitator and owner of Inky Brittany 

She made people listen to the ones who were usually skipped over and never counted, the ones who were usually dismissed, and whose voices were not seen as very important. Judy made it known that everyone's voice and contribution is important, in the smallest and largest of ways. And how much better the world is when we slow down to take the time to count each one. She laid the bricks we are walking and rolling on today, and her impact will forever be present.

I created this of Judy on her birthday in 2020. 

Carol Britton Laws, Associate Clinical Professor; Destination Dawgs Inclusive Education at UGA, Director

Judy came to speak to my Disability Issues in Childhood and Adolescence class in October 2019. One of my students noted:

“Her talk made me realize how much one person can make a difference in our society. If it was not for Judy’s story and her constant fight for her own rights and the rights of others, we would not have a lot of the legislation that solidifies the rights of those with disabilities that we have today. This will encourage me in the future to make impacts where I can and continue to fight for the rights of those around me and that even though I am only one person, I can still make a positive change in our society.”

Susanna Miller-Raines, Program Manager Think College 

I was one of Judy’s drivers when she was in Georgia for the Georgia Disability History Symposium in 2019. After an incredible day listening to her and other Georgia disability leaders speak, we went to dinner across the street from the hotel with renowned disability advocate and former advocacy director at the Shepherd Center, Mark Johnson. He and Judy were old friends, and being invited to dinner and conversation with old friends was a privilege. The dynamic was different, unlike normal national keynotes or consultant dinners. I got to see the human side of Judy Heumann and it is something I will cherish forever. We finished the evening with Mark and Judy racing their wheelchairs down the road in Athens, GA, a moment I will always look back on with fondness. The best part of those two days was going to a Social Work class at UGA and watching Drunk History- “Judy Heumann Fights for People with Disabilities” WITH Judy Heumann herself! 

Gillian Grable, Institute on Human Development and Disability

In 2019 when I had the privilege of inviting Judy to be the keynote speaker at the 5th Annual Disability History Symposium at UGA I had no idea the enormous impact meeting Judy would make on myself, my colleagues, students at UGA, and the Symposium participants. 

Judy invigorated us all; she urged us to vigorously challenge any devalued perception and barrier confronting people with disabilities. Judy engaged people by “making a fuss”. One of my younger colleagues who saw video footage of Judy that I had prepared for our staff meeting said,” Judy showed me that using your voice is the most powerful force. She was a trailblazer who motivated me to do more to help others find their voice.”

I will remember her always - Judy’s legacy lives on for the next generations. Like the late Senator John Lewis, she encouraged us all to get into good trouble. 

Darien Todd, Community Advocate Specialist at CLD

In 2019 Judy Heumann was the keynote speaker at a conference where I was a panelist. I’d never met her before, but everyone’s eyes were on her when she entered the room. She had energy, and everyone was pulled in by it. I wanted to know who she was and how so many people admired and respected her. I am lucky to have been able to be in her presence. As a disability rights advocate, she has inspired me to keep doing the work and it was a day I’ll never forget.

Susan Berch

I met Judy Heumann in Washington, D.C. I was part of a program called JAA - JewishAbilities Alliance. Several of us had gone to Washington, D.C to Lobby and speak with our Legislators. I'm so glad I had the opportunity to meet her. She did so much in her life that she should be proud of.

I also admired Judy for her courage, self-esteem and for not giving up in life. Judy faced many hardships in her life, but she was a fighter! Judy and I were alike in many ways. I have overcome a lot in my life and advocate for myself and others who need it. Judy is a true hero and an inspiration to me.I am a very determined person, just like Judy was. I don't give up too easily. I attended West Georgia Tech and my field of study was Information & Office Technology. I own my condo and have worked at Jewish Family & Career Services for almost 30 years. I am a proud member of a Group called Uniting 4 Change - an advocacy group where I serve on the Leadership Committee.

There is a saying in my Uniting 4 Change group: Rise Up and Speak Out. That's what Judy did, and that's what I do.

In addition, he works in University Mail Center, earning an income while being part of a team. His supervisor notes that Harkins is ready to work when he enters the Center. 

Harkins is a student at Columbus State University’s (CSU) GOALS program.

“GOALS stands for Guidance and Opportunities for Academic and Leadership Success, and I think that really nails what we're all about,” says Dr. Gregory Blalock, associate professor of special education in the College of Education and Health Professions. Blalock started GOALS in 2008.

As an inclusive post-secondary education program, or IPSE, GOALS guides students with intellectual disabilities and the opportunity to attend college. “It was an opportunity that, just a few short years ago, didn't exist for a fairly large segment of the developmental disability population who wanted to attend college and could benefit from it,” he added.

College for someone with intellectual (ID) in the GOALS Program gives them the same experience as students without disabilities. “It looks like any college student going to class. And even if some students require additional supports, we try to use natural supports, such as other students in the class,” says Dr. Toni Franklin, Assistant Professor of Special Education in the Teaching, Leadership, and Counseling Department.

Eight universities and one technical college in Georgia offer programs to assist individuals with ID in pursuing higher education. Together, they are a part of the Georgia Inclusive Post-Secondary Consortium (GAIPSEC), which includes partners such as the Georgia Council on Developmental Disabilities (GCDD) and the Center for Leadership in Disability. 

“We guide individuals who would not typically have the opportunity to attend college. We give them the college experience while guiding them to enhance their academic, leadership, and occupational skills,” says Franklin.

The GOALS Program at CSU represents an inclusive college program built upon personal advocacy, career development, health education, and civic engagement principles. Students complete 36 credit hours of inclusive and program-specific courses and inclusive work-related internships designed to support students' academic and personal leadership development.

And the freshman experience is a natural rite of passage for college students. They are overwhelmed by the huge campus, trying to make new friends, figure out where classes are, and even find out where they belong. 

And eventually, they start to relax through the transition and make Columbus State University their home away from home. “This is their campus; this is their home; this is their playground; this is their place of study. This is their place of work,” adds Blalock. 

One of the most important aspects of breaking stereotypes for individuals with intellectual disabilities is providing the opportunity for them to live in society and be engaged in their community.

Peer mentors help in finding and engaging in those opportunities with the students. As with most IPSE programs in the state, the GOALS Program provides peer mentoring to support the academic and social development of everyone participating within the GOALS Program. Academic mentors provide academic tutoring and class support services designed to help GOALS students succeed. The Best Buddies at CSU chapter provides the foundation for GOALS students to develop authentic friendships with others from across campus.

“Outside of the academic area, my job is to look for different social events happening on the main campus and try to get them involved,” says Lilly Patterson, peer mentor. “I work to increase some students' social interaction during their days if they are working with me. It also makes it a meaningful experience on campus for them.”

One of the program’s challenges is the cost of tuition for students with ID. Many families did not begin saving for their child’s post-secondary education, as these programs are relatively new. 

The cost of tuition and fees may seem prohibitive. “It's a barrier that we need to focus on to increase the numbers in our program and in programs all over the state of Georgia,” added Franklin.

Those leading the program would like to see increased financial support and aid. 

“Financial support would be extremely helpful to the students,” said Franklin. “Our students, like any typical college student, have tuition fees. And many of these parents and these families were unaware of the opportunity to go to college, so they are unprepared. And in addition to that, many of these programs have additional fees for this extra support, so families could benefit from any assistance they could.”

This past January, the Georgia Council on Developmental Disabilities hosted an IPSE Advocacy Day for which students across the state convened at the state Capitol to advocate for legislators for increased program funding and a new scholarship for student support. Specifically, advocates promoted support for HB 185, to create a state-funded scholarship like the HOPE Scholarship, for which IPSE students are currently not eligible.

Georgia’s HOPE Scholarship is available to Georgia residents who have demonstrated academic achievement. The scholarship provides money to assist students with a portion of the tuition cost at a HOPE Scholarship-eligible college or university. By being available to IPSE students, a similar scholarship would ease access to college programs for Georgia students with ID, allowing students and parents to include college more easily in planning their child’s future. Currently, there are a few scholarships available to IPSE students, though they may be eligible for PELL grants.

The bill received a unanimous vote in Georgia’s House of Representatives, 165-0. At the time of this writing, it has passed out of the Senate Higher Ed committee and is waiting for a floor vote in the Senate. Then, because changes were made, it must return to the House for a vote.

Aside from getting a higher education and employment opportunities, the intrinsic benefits of going to college are making friends and lifelong networks, gaining employment, and being independent. 

“I just do what I want to do whenever I'm free. I hang out with my friend Daisy, and she's a good person. Sometimes I come to school on Mondays early, around six or maybe seven. I go to the library until my class starts,” added Harkins.

“There is an increased level of self-determination,” adds Stephanie Marshall, former special education teacher and GOALS Program Coordinator. “They are the major player in their life in college. And I think that's the goal here – we want them to be able to make their own choices once they leave here.”

Additionally, some GOALS students, like Harkins, are also employed on and off campus. Harkins works at the mail center, while another student works at the local grocery store. 

“There was a customer that came, and I bagged his entire groceries,” added Khayla Johnson, a second-year student at GOALS. “He gave me a $20 tip for just bagging groceries alone. Being friendly and nice to them is important because you never know if a customer comes in and they're having a sad day, and you want to cheer them up a little bit.”

The students also develop career experience. “They are working on a degree within a career field of their interest and are in a better position to be competitively employed by the time they graduate,” added Blalock.

“I feel when someone has interviewed me after a few times, and if they show me how to do something, I'll be ready for the job by the week,” adds Johnson confidently.

One of the positive unintended impacts of the program is on Columbus State University students who are working on their education degrees and their involvement and interaction of college students with ID. This helps in preparing these future teachers for their classrooms and for their students. 

“I prepare teachers for K-12 schools, and special educators and otherwise,” adds Blalock about his role at the university. “They have now been to a university where students with intellectual disabilities and other developmental disabilities have succeeded at the university. That has to impact you as a teacher. It has to affect how you provide educational opportunities for a student. Because now, suddenly, you're not looking at a fifth grader with Down Syndrome. You're looking at a fifth grader with Down Syndrome, who's now a potential college graduate.”

To learn more about GOALS at Columbus State University, visit their website. 

To learn more about Georgia’s nine IPSE Schools, visit the Georgia Inclusive Post-Secondary Consortium (GAIPSEC)

When the organization started is a moot point when you consider the impact it has had on mothers, fathers, and children across Georgia over the last 40-plus years. 

Everyone, including Arno, knows it started with parents from an advocacy perspective. “These parents were pretty fierce,” shares Arno, who remembers the founding parents at the Georgia State Capitol and advocating for their kids. The average statistic for people with Down Syndrome is one in 600, and Atlanta is fast growing city with a vast metro area. In serving families and caretakers from McDonough to Rome to Griffin to Buford, DSAA’s services need to be impactful and meaningful. “When DSAA started, it was really resource-based. Over the years, it has transformed into a programmatic organization that aims to meet the community's needs,” says Arno. Following the needs has allowed DSAA to serve families across the state intentionally. “Our direct programming includes Mom nights, a Hispanic support group, and a group called the Black Family Connection that we just started two years ago and are so proud of,” explains Arno, who considers DSAA more of a “support” agency. “We really follow the needs of our community.”  

A father and his son navigate information for families of children with Down Syndrome. While phone trees and group gatherings were the norm, the pandemic challenged DSAA to pivot from the way it reached the statewide Hispanic community. The organization focused on utilizing technology such as social media and Zoom calls to reach the population but found that the learning curve was even larger than imagined. “We really tried to encourage the use of social media in a population that traditionally may not resort to social media as often. We identified that some families have trouble with logging into a Zoom call. This is all new to them,” she added. People came together to help families in need. Parents worked together with other parents to help people navigate Zoom. DSAA even created a short video on opening up a Zoom call that is now available to all families. DSAA’s website can also be completely translated into Spanish. The Hispanic family’s group also partners with other organizations that help connect with new parents. Being able to bring the families and connect them to DSAA from either prenatal or at diagnosis helps build relationships and provide access to early intervention programs.

“This keeps us connected as a community from the beginning and not let the children fall through the cracks and provide what's best for them in their development,” says Cebollero.

To Arno, the impact needed to go further. Black families were missing at the table. She’d see families at the organization’s annual Buddy Walk but never saw them through their actual programs. “I couldn't figure it out,” said Arno. “I would go to them and say, ‘I don't understand. You're coming for Buddy Walk, but I don't see you at any other time. It came down to not seeing people that looked like them. I didn't have people on my board that looked like them. I didn't have people at my programming that look like them. We discussed things like wills and trusts that those parents in that community are not thinking about. They're thinking about getting support with bills or getting childcare. I was answering the wrong questions for them.” In 2021, DSAA founded the Black Down Syndrome Family Connection program. It was created from an expressed community need to gather Black families to connect, share resources and ask questions related to the Down Syndrome community. “We were tapped to be taskforce initially to determine what the need was and give a perspective of what it's like to be a parent of a child or be a person with Down Syndrome and be Black,” says Mya Prowell, chairperson of the DSAA Black Family Connection. 

The group is intentionally focused on the issues surrounding the Black community. Prowell explains, “First and foremost, the thing is that the [Black community] doesn’t want to accept the disability. We find it hard to accept that there is anything different about our child. And so the thing is, is consistently trying to normalize them to what we're used to. The second thing is miseducation or being uneducated, like not truly knowing the extent what Down Syndrome truly is. And then the third thing is the financial aspect.” Black people account for a considerable amount of the poverty level, resulting in lack of access to certain things like time to get their children to therapies because they have other children. “They have a difficult time navigating just day to day,” shares Prowell. “And then when it comes to government-assisted programs like Medicaid, they don't have the service providers all the time. It's a huge disparity regarding being knowledgeable about medical conditions.” What started with four parents has grown from a task force to a committee of five. Its Facebook group has over 180 members. The group also hosts meetups statewide to ensure parents can meet, mingle, and share information. Advocacy was the foothold of how DSAA started back in the 1970s. Prowell agrees that families must be at the Capitol but is realistic in meeting the parents where they are. “Our families don't even know what advocacy means in the Down Syndrome community,” add Prowell. “We need to get our families to show up to IEP meetings. It starts there. It starts with medical appointments, making sure you speak up when you feel something is wrong. So just advocating at the lowest level is where we're trying to get our families first.” The support group is layered with issues that matter for the Black community.

“This world is already hard to navigate as a Black person, and then as a Black male too,” says Prowell, thinking of her 11-year-old son Tristan. “And there is a very high rate of males with special needs in prison because nobody realized they really had one. The great thing about Tristan is that you can see the disability on his face. But we have to factor in that people are not going to care [about] not putting him in jail because he was at the wrong place at the wrong time.”

So, that’s why Prowell encourages Black families with children who have Down Syndrome to get involved at the very basic level. “We need to show up. Our first steps are getting our families and parents to help themselves first,” she adds. And, while the focus has been on babies and new moms, DSAA partnered with Gigi’s Playhouse Atlanta, the local chapter of a national organization that serves the Down Syndrome community, to support its young adults through Gigi’s adult transition program called EPIC. Howie Rosenberg, executive director of Gigi’s Playhouse Atlanta, is proud of the partnership with DSAA and collaborating resources to help families thrive. With its EPIC program, “We mix life skills, independence, fun, friendship building, and advocacy teamwork. Our curriculum considers, ‘what do young adults need to do?’ They need to learn how to cook, they need to learn how to do their laundry, they need to learn how to live independently,” says Rosenberg. Leaders in the community like Arno or Rita Young host trainings through EPIC for young adults to build independence and confidence. The partnership with DSAA and Gigi’s Playhouse Atlanta has allowed both organizations to increase their impact and reach for the community they serve. Gigi’s serves about 1,100 families in Atlanta. Reflecting on her career at DSAA as executive director, Arno says, “It’s actually one of my proudest things that I've done in my career in terms of building this community. We fight for inclusion every day. It's easy for me to say we need to be inclusive and all that, but it's just not. And it's not going to be unless I intentionally do something.” Visit their website to learn more about the Down Syndrome Association of Atlanta.

“Believe me,” said Javier Cremer, a second-year student at Georgia Tech University’s Excel program, “if I hadn’t become an advocate with a disability, I couldn’t find my true self right now.”

Cremer is amongst the few that are a part of the upcoming generation of disability advocates, following on the backs of giants like Justin Dart, Judy Heumann, and Georgia’s own Lois Curtis. Among many other advocates, Dart and Heumann led the fight for landmark legislation such as the Americans with Disabilities Act (ADA).

It has been over 30 years since the passage of the ADA, which became an all-encompassing civil rights legislation for people with disabilities across the country. It created momentum for other laws and rulings, such as Olmstead. Lois Curtis was the plaintiff in the Supreme Court’s L.C. versus Olmstead, which transformed the way states provide services to be more community-based rather than institutional settings.

And these giants, amongst many, have left their indelible mark on disability history. Lois Curtis passed away in November 2022 at her home in Clarkston, Ga. Judy Heumann passed away in early March 2023 at the age of 75, causing ripples of dedication, memories, and moments posted across social media about her impact on disability rights.

This leaves a looming question among today’s advocates: “Who’s next?”

Groundhog Day

“People like me, when we go to the Capitol some days, and I run into all my colleagues, we sort of call it Groundhog Day,” says Sheryl Arno, Executive Director of the Down Syndrome Alliance of Atlanta, referring to the 1993 movie where the main character relived the same day over and over again.

“We see the same people, same advocates at the Capitol. And we know that we need that next group coming up. It’s really scary because it's hard to find advocates, especially advocates that don't have children with disabilities. After all, we need both. It's so important because otherwise, we will be in trouble.”

People who have been in the advocacy world for a long time are excited for a new batch of young people to join the conversation and feel that their voices have been missing for too long.

“We run the risk of all the hard work that’s been happening in the last 50 years becoming stagnant,” said Molly Tucker, Training and Advocacy Manager at Georgia State University’s Center for Leadership in Disability (CLD). “That’s the conversation Mark [Crenshaw] and I had all the time. It was always, ‘we’ve got to get more people in the rooms.’ When I started at CLD, he made the joke that he could tell you, every meeting he would go to, the 10 people that would be there. And he’s like, ‘I’m tired of the same 10 people being everywhere.’”

But, this generation is finding their own space to make their impact for what matters to them.

Paving the Path Through History

To know where you want to go, you must know where you have been. A program that has been gaining momentum is Project SETA, or Students Enhancing Their Advocacy, through Georgia State University’s CLD. The project is funded by the Georgia Council on Developmental Disabilities (GCDD).

An issue that is especially important to the Project SETA team is learning about past leaders and how existing legislation works in the modern world.

“We talk about the 504 sit-ins and the signing of the ADA,” said Tucker, who also leads young students through Project SETA. “They’re in college and were born post-ADA. It is important for them to know how we got to where we are and how we can continue moving forward.”

These lessons have helped Project SETA students hone their focus on the most important issues.

Regarding Georgia’s youth advocates, Mark Crenshaw, Assistant Director at the CLD, mentions the effectiveness of young people being masters in their own experiences and topics of choice.

“What excites me,” says Crenshaw, “is that they are clear about what they’re most passionate about. They are not trying to advocate for 15 things.”

What They Care About

Noelle Ford, who is about to graduate from Kennesaw State University’s (KSU) Academy for Inclusive Learning and Social Growth program, started her advocacy journey at her college.

On campus, specific pedestrian bridges had about a one to one-and-a-half-inch gap. “And I would get stuck,” said Ford, who uses a wheelchair. “People are walking; we also have skateboarders, people using scooters, and things like that. Some people actually tripped, and I thought, ‘I can actually get them to flatten this because if you think about it, people can also flip and injure themselves.’” She advocated with the university and made pedestrian bridges accessible for all.

Her advocacy didn’t stop there. She also worked with the university to put “Push” buttons, or sensory doors, in some of the bathrooms in one of the campus’ main buildings.

However, Ford is also noticing flaws in ADA’s call for accessibility.

“Accessibility is just more of an umbrella term,” adds Ford. “I wish the ADA and accessibility were way more specific. Like, one bathroom could have this, one bathroom could have that; I wish it would be pinpoint accurate. Say all bathrooms need automatic doors, all bathrooms need grab bars...pinpoint.”

Myles Henderson, 22, is a new self-advocate and is realizing the impact and importance of his voice. During the legislative session this year, he went to the Georgia State Capitol for the first time to advocate for waivers, increasing the rate of Direct Support Professionals and employment.

Seeing it for the first time, he was awestruck by the Gold Dome. “It was amazing,” recalls Henderson. “I liked the experience and the opportunity to tell my story.” Henderson testified for both the House Budget and Senate Appropriations Committee on the importance of the waivers and increasing the rate for Direct Support Professionals. He is currently on the waitlist for a NOW/COMP waiver.

Henderson also advocated at GCDD’s Employment Advocacy Day. “I love to work,” said Henderson. “And we want to work and we want more opportunity.” Henderson used to work at Kroger and Uncle Maddio’s Pizza. Now, he volunteers at the Boys & Girls Club as a greeter and works with the children who are a part of the organization.

Modern Day Advocacy

Additionally, with the ever-changing media landscape and technology, accessibility and the ADA are coming into play. While the law only counted for physical buildings and structures such as curb cuts, how people with disabilities and without disabilities communicate today has caused a conversation on the extension of the ADA through communication portals.

Over 97% of the US population now has a mobile device, according to the Pew Research Center. And approximately 78% of people with disabilities use smartphones like iPhones or Android. This means there is access to photos, videos, and social media platforms 24/7.

When the world shut down due to the COVID-19 pandemic, many people with disabilities were isolated as in-person programs and events were canceled. Many being immunocompromised, their health and safety also required them to stay at home, including till today. They turned to social media to stay connected with each other and have a sense of community.

Social media platforms became even more important than ever for this generation of advocates by creating a community and a space to share.

“We use social media. That’s our platform,” said Stripling, who wants to use social media to bring more awareness about the deaf community. “Watch us sign, act, and get involved in the music world. It's an identity thing. We want to be recognized. When people see it, they recognize us, and that's how we get the ball rolling and keep the momentum. And then that pushes the door more and more and more open.”

“I see deaf people using social media all the time, and that's how we can disseminate the information, videos, encouragement, and fostering people’s growth,” she continues.

Social media is more present in today’s younger generation than ever. Platforms like TikTok, Twitter, YouTube, Instagram and Facebook have carried the message faster for the disability community.

They are using these spaces to educate about disability history, disability issues, and also about everyday life.

According to an article in Refinery29, TikTok allowed disability advocates to bring attention to the Supplemental Security Income Restoration Act, ensuring that people with disabilities don’t lose their SSI benefits if they choose to get married or work part-time.

Recent corporate changes at Twitter has concerned the #DisabledTwitter and #DisabilityTwitter community. The short-form social media platform allowed individuals with disabilities to come together to educate, communicate, socialize, and advocate for issues that matter to them. Some even considered it a lifeline, according to an article in The Washington Post.

With security issues and now the disbanding of the accessibility team, the access that Twitter provides has advocates wondering about the future of the space and its impact for the community.

Why are these spaces important? The #DisabilityTwitter hashtag reached over 1.2 million people in seven days when used in tweets and posts, according to BrandMention.

On TikTok, July’s Disability Pride Month hashtag #DisabilityPride surpassed 300 million views, meaning that the message and advocacy efforts resonate with the disability community and community-at-large.

The Making of Future Leaders

Future leaders come from today’s advocates. The key is to develop more peer leaders so young advocates can build a path that meets their moment while they learn from those who have paved the way.

When asked about her next steps in advocacy, Stripling gets excited about the thoughts of coming to Atlanta and going to the Georgia State Capitol. And she realizes that there is a lot of work to do.

“Our next and new challenges are different, and we have some catching up to do,” laughs Stripling. “ That's okay. We're doing it. We're catching up and we're fighting for our people, our community by mentoring and leading. That's how we can actually form future leaders.”

Darien Todd, a self-advocate and Georgia State University’s (GSU) Community Advocate Specialist can’t believe that he’s now a trainer for advocacy.

“If you would have asked me when I was in high school if I pictured myself mentoring young advocates and talking to them about very important topics… I would have looked at you and said, ‘no, I don’t think that’s the position I would be in.’ But I am in this position, and I love every moment of it,” says Todd, who trains young advocates through Project SETA and is a graduate of KSU’s Inclusive Post Secondary Education (IPSE) program.

Local, statewide, and national programs are noticing the need to train young disability advocates. Besides programs like Project SETA, other local programs also offer peer-to-peer interaction and training for advocacy and leadership.

Howie Rosenberg, executive director of Gigi’s Playhouse Atlanta, speaks of the organization’s EPIC (Empowerment Participation Independence Community) program built for young adults. Amongst many offerings of the program that teaches independent living, employment skills, and socialization, one of the key focuses is advocacy.

“We try to instill to them that their voice matters,” explains Rosenberg. “We start with things like the President of the United States, the Governor of Georgia – every single person is elected by voting. We ask them, ‘do you know how much your vote counts? You get one vote.’”

For Rosenberg, it’s a way to teach young advocates that they are all equal in the decisions people make on who represents us. “It really is one of the few places where we are all equal,” says Rosenberg. “We all have that one vote. And so we talk about, like, how to decide on who we want to represent us. Do we want somebody to represent us that doesn't care about people with disabilities?”

Thinking of the impact of the next generation, Rosenberg recalled the advocacy work around Gracie’s Law, where families and young advocates came together to encourage Georgia lawmakers to pass a law that allows people with disabilities to receive equal consideration for organ transplants.

At that time, the advocacy efforts resulted in Gracie's Law being passed to zero in the State of Georgia 165. “It passed because the advocates made it pass. So they understand that they were part of it, and if they were not out there fighting for themselves and others, it wouldn't have happened.” Governor Brian Kemp signed Gracie’s Law making it law in 2021.

Programs like Gigi’s EPIC and Project SETA are just a few that are shaping the next generation of advocates nationwide. Partners in Policymaking, a national advocacy training program that the Minnesota Council started on Developmental Disabilities, had programs such as Junior Partners and Youth Leadership that were activated by Delaware and Oklahoma, respectively. The National Consortium on Leadership and Disability for Youth uses learning, connecting, thriving, working, and leading to guide its work for youth leadership.

Sharing knowledge expresses hope and compassion for current and future generations. The disability giants have shown the world that better lives are possible among the disability community and can be achieved through activism, innovation, and heart.

“I’m incredibly hopeful,” reflects Crenshaw. “I get to spend time in spaces with young people who are motivated and learning the skills needed. It doesn’t take much time in a room with folks in their teens and twenties and thirties to get really excited about this movement's next generation of leaders.”