The Now Comp Waiver Medicaid system in Georgia: the problem
Georgia’s Home and Community-Based Services waiver programs are crucial to ensuring individuals with disabilities in Georgia have meaningful opportunities to live independently in the community. Georgia manages access to these programs through a series of waiting lists. This paper discusses these issues in detail and posits that the waiver planning lists in Georgia do not move at a reasonable speed because of Georgia’s persistent failure to provide meaningful access to home and community based services.
Production Notes
The fun one: Skydiving Scene
How do we capture Ben mid-skydive? We thought through options such as sending our cinematographer Zach up. He was willing, but he wasn’t willing to jump with his camera simply ad hoc-ly strapped to himself. A gopro wasn’t going to cut it either...here began a rabbit hole search into the world of base jumpers and skydivers who were recording their jumps. Then we found him. Nicholas Lott had done some jumps and video collabo-rations with a RED camera. This was the type of footage we wanted for the film and this was the camera that Zach didn’t have the accompanying skydiving equipment to make the jump with. Nicholas was one of only two peo-ple in the world who was making these jumps with a RED camera. We reached out to Nicholas about the shot
and he was in. A few days later he flew in from Texas and we all made our way to Skydive Atlanta for the jump day. Coordinating Ben’s jump was much more straightfor-ward than locking down the aerial cinematographer. Ben had been skydiving before and he was more than eager to get another jump on camera. With the film’s budget we were watching our variable expenses but the value of having Ben go skydiving in the film and it being shot with an actual pro-fessional camera was clear. It was important to have the full-est possible picture of who Ben (and all of the subjects) are and what they want in their lives. It matters that people with disabilities are represented in the media as their full selves. This means that their human desires, human dreams, and hu-man adventurous sides are captured the same way as people who don’t have disabilities are represented in the media by their desires, dreams, and adventurous side. Ben’s second skydiving jump went off without a hitch, you could hear him hollering all the way down. It was, for sure, an epic shot and a first for someone with a disability in a film.
Ben, Tay, and Michael look over some of the skydiving footage.
The bright idea: Stop-motion segment
This system is dense. That was the overarching feeling after Michael McDonald, 6,000 Waiting’s Director, and I interviewed Eric Jacobson, Executive Director of the GA Council on Developmental Disabilities. There were a lot of details, a huge map of decisions, and a long history to ex-plain in relation to the medicaid waiver system in Georgia. We were honestly having a hard time visualizing how to in-clude this necessary but complex (and let’s be honest unen-gaging) information in the film. When it came down to it, we decided that what mattered most was being able to convey the information in a way that would keep people interested long enough to introduce some of the complexity of the waiver system and to instill some hope that things could be different and this difference was real and important in people’s lives. All while keeping it light and entertaining. Not a small task. The idea of stop motion was appealing because it could hold the many varied details and engage people in more than one way.
We wrote the script in a late-night porch session. With copious amounts of tea and doing our best to impersonate Ben and how he would naturally phrase things, we came up with a script that would hit all of our points. Now the challenge was to learn a completely new software that would put the still pictures together and gather the very specific and sometimes obscure supplies. Check. We started off by having Ben move the figures around on a glass top table with the camera filming the figures from underneath. We all huddled together in his sister's room (the quietest place in the house) and made it through about one paragraph before realizing this was not going to work. It was taking too long and we were on a tight schedule. Switching gears, Zach and Ben worked on recording the audio for the piece and Zach thankfully hit record on his camera too, just in case. What came out of their recording session was gold, and we knew we had to keep the video clips of Ben in the piece too.
Our filming time together ran out and Michael and I made a plan to finish up the stop motion visuals about a month later in Montreal, where he had moved for a job. During this recording time we spent a week in the conference room at his new office building in a make-shift filming studio. If you watch particularly closely during the sequence, you can see a shift in the white background tone in the beginning, this is when we started shooting the second go-round. Armed with google translate on my phone and elementary school French class verbs, I gathered the rest of the materials we needed for the shoot. Michael mastered the software and setting up the studio and we were off. I think we took upwards of 5,000 pictures to complete the whole sequence. Putting together the stop-motion segment was a triumph for us. I still have some of the ‘waiver’ post-it notes in my scheduler and Michael keeps the hot wheels wheelchair with its eagle passenger on his office window sill. We hope that it translates into an easy to digest explanation of a very complex history and system.
The stop-motion production room. A bedroom converted to a studio with supplies scattered across the floor. Many of the elements in the stop-motion sequence can be seen such as the peaches, locks, and paper cutouts. The center of the picture is the white background on which the segment plays out on.
The realest moment: Central State Hospital
The grounds reminded me of the Lower Ninth Ward post-Katrina. We were on our first filming week of 6,000 Waiting and on our way to interview a prospective subject in the film. Just by chance, we were traveling right by Central State Hospital, or what's left of it. We had to stop and walk the grounds. It was important to be in the place that held such a deep and wounded history for Georgia, and quite frankly the entire country.
Central State Hospital was once one of the world’s largest insane asylums. It was a place that people with disabilities were routinely and compulsively sent to live. Or sent to die. “It has witnessed the heights of man’s humanity and the depths of his degradation” Dr. Peter Cranford wrote in his 1952 book But for the Grace of God: The inside Story of the World’s Largest Insane Asylum. From 1842 it saw thousands of patients through its doors. It had a patient doctor ratio of 1 to 100. You didn't even have to have a specific diagnosis to be sent there. And by the 1960s it began shutting down. A nation-wide movement started to deinstitutionalize people with mental illness and disabilities, yet there are still 200 people with disabilities in one of the campus buildings.
Nick sits in front of a black screen held by Michael and Zach. Filming equipment is strewn across table in his room at the nursing facility.
Zach films Noah and Naomi sitting on a mat.
We chose to include footage of Central State Hospital in 6,000 Waiting because the place is literally falling apart. It’s campus will eventually be developed and the memory of what took place for the 25,000 patients who perished in this place will fade. Understanding the seriousness of our path from having a place like Central State Hospital in our community to the present day of accepting that people with disabilities are relegated to life in a nursing facility or left without needed support is an important insight to have. It’s a knowledge that cannot be unknown, and it's a knowledge that spurs the demand for something different.
On a subsequent trip to the campus of Central State for additional b-roll, I walked through the building where the 200 people with disabilities are housed. It was summer and all of the doors were propped open for a draft. I heard staff in distant corridors but I didn't see any. I did see rooms with people in beds and schedules on their doors of when they last had their incontinence garment changed. That was the only item I saw that marked the passing of time. There were no visiting hours posted, no schedules of activities or outings, nothing in sight that even denoted an individual’s personal existence. I could not tell you who these people were at all, only that they had been changed sometime that morning. This is why the film 6,000 Waiting exists. We are fighting for the opportunity for individuals with disabilities to flourish and to contribute back into their communities. It’s time for the era of social resignation to institutionalization to close. Whether it’s in the last gasps of a state-run hospital or the popular current trend of private nursing facilities, we can do better. End the waitlist. Learn more about Central State Hospital in Atlanta Magazine’s article.
Q&A: A conversation with GCDD, L’Arche, and the film team
Can you explain the partnership between The Georgia Council on Developmental Disabilities and L’Arche Atlanta, what the Storytelling Project is about, and what the goal of 6,000 Waiting is?
Irene Turner, Producer & Storytelling Project Director
The Storytelling Project was born out of the idea that storytelling should be an integral part of policy decisions. In 2017, The Georgia Council on Developmental Disabilities (GCDD) created a grant to pursue just that and a partnership was born. L’Arche Atlanta is a leader in the idea that ‘disability housing’ is more than providing a structure to live in and staff to assist people with disabilities. Building actual communities of people with and without disabilities who live and thrive together is the core of their mission. But as these still microcosms are popping up across the country, the wider community continues to rest on foundations of people with disabilities being segregated. Funding is a major way that this segregation is upheld and Georgia’s medicaid waiver system is a front-running culprit in continuing the segregation of people with disabilities out of our communities. Partnering with GCDD was a natural fit to push back against this segregation for the wider community, and progress L’Arche’s mission beyond the four walls of its home in Decatur, GA.
Since 2017 The Storytelling Project has endeavored to collect and amplify the stories of people in Georgia with disabilities through a varied assortment of mediums. We’ve collected 100 written stories with accompanying photographs of individuals and families. We’ve released a podcast series that explores the details of people’s lives with disabilities and how they navigate a world built without them at the drawing table. The film 6,000 Waiting is a battle cry of the story of Georgia and the people who struggle for the life they want within its state lines. The hope of 6,000 Waiting is to wake up the decision-makers and humanize the over 6,000 people waiting for a chance to live their fullest lives within their communities, to energize the state’s citizens to lend their voice to the choir that’s asking for an end to the waitlist, and the amplify the story of three courageous people manifesting their destiny within a system that’s geared toward locking them away.
What change do you believe 6,000 Waiting will create in Georgia and other states?
Maria Pinkelton, Public Relations Director GCDD
Through these three stories, we hope to shed light on the 6,000 Georgians who are waiting for waivers. While each states' waiver process is different, we know that these stories will resonate with viewers across the country. We hope to continue building awareness of the issues facing those who are on the waiver waiting lists.
Why was a documentary film chosen as an advocacy tool to explore the Medicaid Waiver issue?
Maria Pinkelton, Public Relations Director GCDD
The more tools we have the more people we reach which means the more capacity we are able to build on this issue. The Storytelling Project and it's website, podcast, Over the Wires video storytelling component and now this film serve as an ecosystem of waiver advocacy tools in support of increased funding for Medicaid waivers.
How did you find Noah, Nick, and Ben?
Irene Turner, Producer & Storytelling Project Director
Through the Storytelling Project we’ve collected over 100 written stories from people with disabilities from across the state of Georgia. Sending the word out through networks, cold-calling nonprofit organizations, and walking around small town squares we reached out to spread the word about the storytelling platform. Noah, Nick, and Ben all told their stories in that first year of the project and were included with the 30+ film story candidates in the film team’s planning brainstorms. Consideration was given to how to tell the story of the medicaid waiver system in Georgia in a way that spoke through the experience of the individual lives that were directly affected by its demoralizing lottery system. The three stories featured in the documentary each exemplify different arbitrary aspects of the medicaid waiver system: Ben received a waiver because he applied before the state of Georgia changed its criteria of specifically having an intellectual disability to receive a NOW or COMP medicaid waiver. Noah applied for a waiver after this change in criteria, but he happens to also have an intellectual disability so he was granted a waiver. Nick had a waiver before he was hospitalized with a bed sore and discharged into the nursing facility. Unfortunately the rules changed in that time so he is no longer eligible for the waiver he had before the nursing facility. These types of details showcase the myriad of complex changing barriers a person can face when fighting to live in the community and live life on their own terms.
Will you describe the working process of the film makers?
Irene Turner, Producer & Storytelling Project Director
The filmmaking team was composed of filmmaker Michael McDonald, the cinematography team of Rhyme & Reason Zach and Lexi Read, and project director turned producer Irene Turner. The team met for the first time in March of 2019 for a story-immersive weekend of bonding and brainstorming. Michael had recently completed a 12-part video series for L’Arche International called As I Am. Zach and Lexi had been the film team behind L’Arche Atlanta's feature on The Today Show. Irene Turner had been serving as the director for the Storytelling Project. Each team member brought their own expertise and together they crafted a plan: visit these three individuals and record as much as their story as they could then weave together the medicaid waiver story….and change the state!
Over several weeks the team traveled around the state to listen, belly laugh, persuade Nick’s nursing home managers to allow us to film, meet extended family, pour through library archives, and created a storyboard weaving the lives of Noah, Nick, and Ben together. The film was edited together in the various places each team member lived, Atlanta, Gainesville Florida, Montreal Quebec. As well as in some unlikely places including planes, a random tiny house in Colorado, and many airbnbs. Over the next year the film was stitched together and rounds of culling and additions with GCDD brought forth 6,000 Waiting.
The final film you are watching is the product of the life experience of the three subjects featured and an articulation of the collective consciousness of countless advocates and creatives. Read more in the Production Notes to learn about the technicality skydive scene, the decision and process of creating the stop-motion section, and the experience of capturing scenes at Central State Hospital.
What are the next advocacy/policy steps GCDD is taking?
Maria Pinkelton, Public Relations Director GCDD
The GCDD policy team is currently building its legislative agenda for the 2021 Georgia Legislative session. The film will be used in tandem with outreach from statewide disability advocates, the Hidden Voices Podcast, the placement of collected written stories and photos, and the Over the Wires video storytelling content to build awareness across the state about the need for increased funding and supports for Georgians with developmental disabilities and their families.
What significance does this film hold for L’Arche? Alt. What is L’Arche’s connection to the film/waiver issue?
Tim Moore, Executive Director, L’Arche Atlanta
As an organization with the privilege of supporting people who have waivers we witness everyday the difference it makes in people's lives (and their families). One of the hardest parts of my job is talking with individuals and families who don't yet have a waiver but need one. These are stories of incredible hardship and perseverance and it's devastating to hear their unrealized longings for basic freedoms most Americans take for granted (like the freedom to NOT have to live in your parents’ home the rest of your life). We knew we had a responsibility to the 6,000+ people (I believe there are thousands more who haven’t yet applied) to fight for their right to the freedoms our core members experience.
People may be surprised to learn that young people are the fastest growing population in nursing homes. Why do you think this is such a hidden occurrence?
Maria Pinkelton, Public Relations Director GCDD
GCDD believes that parents will turn to alternative placements such as skilled nursing facilities when they find it difficult to get the necessary resources to care for their child with a disability at home. Because Georgia has an over 6,000 person waiting list for home and community based services, because Georgia does not have a robust family support program, because the Katie Beckett (TEFRA) waiver is limited based on eligibility, and because school systems only provide resources for schools – parents often feel like there is no alternative but institutional placement.
Why does the state government of Georgia want to keep people on such a long waiting list?
Maria Pinkelton, Public Relations Director GCDD
Like all issues covered by the Georgia budgetary process funding is determined based on priority. All levels of government fund the programs and services they determine are the priority. This means that Georgia legislators and elected public officials have decided that home and community based services for people with developmental disabilities are not a priority. Other states have decided to try and address the waiting list by allocating the necessary funding to make progress in taking people off the waiting list.
Beyond the individual lives of the person receiving the waiver changing, what societal or community change would happen if all the waivers applicants were funded?
Tim Moore, Executive Director, L’Arche Atlanta
I want to say that the waiver is not going to solve everybody’s problems. There’s more work to do after waiver funding is passed (employers still need to be persuaded to hire people with disabilities, transportation will remain a challenge, and attitudinal barriers will still exist to name just a few) but waiver funding will lay a foundation of independence for most Georgians with disabilities. Some possible macro changes: Two parent households with an adult child with a disability would be free to earn two incomes. That not only diminishes reliance on other public benefits but also adds to the overall economic output of the state.
What challenges did you face filming in a nursing facility?
Irene Turner, Producer and Storytelling Project Director
When developing our filming plan for Nick’s story in the nursing facility he resides in, we decided to well, just go for it. We walked in the front door with our equipment, did not explain why we were there, and set up the cameras and lights in Nick’s room. We were well into the second hour of filming before the manager on duty got word of our presence and started an inquiry as to why we were there, what would be included in the film, and what permissions were necessary. Happily for the film it was determined that since Nick is not being ‘kept’ there in a legal sense (he’s being kept there in a practical sense..) he is free to conduct whatever business he wants in his space as long as it's legal. We were officially in. There’s complexity in the ecosystem of nursing facilities. Nick spoke often of the kinship he feels with some of the staff at the facility and the understanding of their experience of burnout and under-employment. This acknowledgment was even in the face of his own, sometimes extreme, sub-par care and treatment. Even in the face of his own dehumanization. We strove to carry this same understanding in our interactions with staff, and though we claimed a stake to be there and document, we also were respectful of these multifaceted realities.
Georgia was the state that brought the Olmstead case to the Supreme Court whose ruling changed the laws from the mass institutionalization in the 1950s and beyond, yet deinstitutionalization in the state of Georgia is still not complete and now there is a long waitlist to get a waiver and services. Are people with disabilities in Georgia really better off post-Olmstead?
Maria Pinkelton, Public Relations Director, GCDD
GCDD has advocated for many years to move people from institutional settings to the community. While the process of deinstitutionalization has taken much longer than anticipated, it has been a positive factor for Georgia and its citizens with developmental disabilities. We have moved hundreds of individuals from state institutions into the community. We believe they have a better life based on the fact they live and are a part of a community. We also know that there are no new admissions meaning that we must be able to provide the quality resources in the community necessary to keep people from requiring an institutional level of care.
What do you hope audiences will take away from 6,000 Waiting?
Tim Moore, Executive Director, L’Arche Atlanta
I hope people will be moved by Nick, Noah, and Ben’s stories, angered by the systemic injustice facing people with disabilities in Georgia, and inspired to commit their time to telling these stories to their legislators.
Maria Pinkelton, Public Relations Director, GCDD
GCDD hopes that this film will shine a light on the problem facing individuals with developmental disabilities and their families. Over 6,000 people have been identified as eligible for home and community based services that will allow them to be a part of their community, get a job, have a home, and be with family and friends. The only way that these individuals will receive the necessary supports is through the Georgia General Assembly appropriating state funds that can be matched with federal Medicaid funds. It is a question about what we think as Georgians should be the priority. We hope that each person who views this film will contact their state senators, representatives and governors and encourage them to support the level of funding need to address this crisis.
Contact
Please contact us for press, screening, events, and general questions about 6,000 Waiting.
ddstorytellingga@gmail.com
Phone
404-735-2705