6,000 Waiting
Synopsis
6,000 Waiting tells the powerful stories of three Georgians with developmental disabilities whose lives are significantly impacted by the staggering lack and complexity of state Medicaid waiver funding.
A film from The Storytelling Project, made possible through a partnership between the Georgia Council on Developmental Disabilities and L’Arche Atlanta, 6,000 Waiting calls for a more inclusive Georgia that has the compassion, political will and accountability to make policy decisions that result in meaningful benefits for people living with developmental disabilities. While they wait for their applications to snake through the maze of confusing guidelines and procedures, these residents and their families can live in exacerbated poverty, isolation, and emotional and physical distress.
Experience the inspiring portraits of Nick, Ben and Noah as they embark on their journeys to acquire this elusive funding. Each at a different life stage, they seek to crumble the barrier to belonging and win the right to create a legacy of who they really are. With persistence, courage and self-determination, they fight to access the resources they desperately need to live life on their own terms.
(Film length: 30 minutes)
The Now Comp Waiver in Georgia, what we found
Letter from the Producer of 6,000 Waiting Irene Turner
This place is like some kind of nightmare, I thought to myself as Zach and I wandered the hallways of the nursing facility Nick resides at. We were on the hunt for a quiet enough room to conduct our first interview with Nick for the film.. We had been there only 20 minutes and the personality of the building and its ethos was screaming at us. The smell of Pine-Sol and Clorox dominates, second only to a kind of staleness perpetuated by never-cleaned window air conditioner units that sputter out scents of mold. The lighting is unnatural and always aggressive. You do your best to ignore the perplexed stares of other residents and worse the yells of both a clear ‘help me’ and incoherent words. You smile at the staff so they don't ask you any questions.
Walking down this hallway and that one, evaluating each room in the maze for a suitable recording space, Zach and I pass a door labeled ‘Bath Room’. I peek in, the Bath Room is not a restroom like you or I would use but a room where people are taken to be washed down by staff. The sight of the large medical equipment takes me back to a hospital 10 years ago. I was 25 years old, sitting next to my best friend on an exam table staring at a doctor. He’s said many sentences at this point but I can't understand him anymore. The word cancer had landed in my ears and would not retreat. My best friend has cancer.
The next many months are filled with hospitals, medical offices, a lot of sitting around, and a lot of fear. I walked alongside my friend as she packed up her apartment and moved back in with her parents. As she slowly lost her independence both from illness and from moving through a medical system that while saved her life, took her personhood at times. She struggled with finances and navigating insurance coverage. There were absolute angels in the nursing and CNA ranks. But there was also a sense of being a number in a large system with a bottom line and tired, desensitized personnel. She was scared and so was I, and she made it through.
The experience of walking with her through this time, however imperfectly I was at it (and I made lots of mistakes) has stuck with me. As I work in the advocacy arena through the Storytelling Project, I’ve noted some particular similarities I see with the struggle people with disabilities face when working to access the waiver. The government of Georgia has chosen to send people with developmental disabilities to institutions, where they receive prescriptive, simplified care. Should a person wish to live in their community and be an actualized individual, they can apply for a Medicaid waiver and get the care they need. However, Medicaid waivers must be approved by the state and the state of Georgia has long underfunded the service, making it impossible to meet the needs of all who are qualified to receive a waiver. Not to mention the mysterious ball of yarn that you have to follow to find your name at the top of the waiting list. In Georgia, there are 6,000 people currently left waiting.
Much like the unknown of going through cancer treatment, for many on the waiting list, their life in a nursing facility is a life-and-death situation. Infections and neglect are daily realities. We’ve heard similar stories all too often in the Storytelling Project, where we collected over 100 stories from people around the state who have disabilities. Over the years we also have heard stories from those lucky enough to receive the Medicaid waivers. These individuals have jobs, build families, go to college, pay taxes and live full lives-as the individuals they are.
In creating this film 6,000 Waiting, we present three incredible people navigating the confounding Medicaid waiver system. It is our sincere hope the film humanizes individuals with disabilities who live in every single one of our communities. Unlike my best friend who had the support of insurance, family, and community and did not have to be put in a nursing home, not everyone with a disability is so fortunate. Go out and find your neighbors who are on this journey and walk alongside them in support. Together, we can move past a system that only serves a few and leaves most with unfulfilled futures and into building a community where we all thrive.
Irene Turner
September 2020
The Storytelling Project amplifies the stories of Georgians with disabilities. The film 6,000 Waiting is an initiative of the Storytelling Project.
Featuring
Ben Oxley
Ben Oxley doesn’t mind if passersbys judge him by his tattoos, earrings and heavy metal band t-shirts; so long as they dont treat him differently because he has a disability. Growing up, his family instilled in him the value of living his life to its fullest, and at times this was doing things that would make anybody queasy. He’s been skydiving, deer hunting and, when he was hoisted onto a stage beside Corey Taylor of Slipknot, pummeled by bouncers.
Now he’s embarking on the most terrifying venture yet: public speaking! Ben is a disability advocate with the Unlock! Campaign of the Georgia Council on Developmental Disabilities, which aims to get more funding for people with disabilities. He’s also a trainer at the Center for Leadership in Disability (CLD) at Georgia State University and volunteers at an HIV prevention group focused on reaching people in the Intellectual/Developmental Disability community.
The film 6,000 Waiting is yet another platform for Ben to broaden his advocacy for people with disabilities. He wants to ensure that people with disabilities get access to Medicaid-funded waivers. Ben received the New Opportunities Waiver, which gives families funds to hire a part-time caregiver who can provide logistical, life-skills and caregiving support to people with disabilities. Ben got his waiver after a nine month wait, but he’s one of the lucky ones. The average wait for most waivers is seven to ten years. Ben wants to ensure that everyone gets access to these funds so they can live a full life.
Whether through this film or his other advocacy work, Ben wants to empower others to do what they want to do, regardless of physical, intellectual, or emotional difference. His mission is ensuring that no person is held back by society because they have a disability, whether or not they have tattoos, earrings and heavy metal band t-shirts.
Check out Ben’s story in That’s Medicaid!
Noah & Naomi Williams
At eleven years old, Noah Williams is a fledgling artist with his own greeting card line. He’s also the centerpiece of his mother’s blog, exceptionalliving101.org and book, And God Remembered Noah, which details one of the most trying times in both of their lives.
When Naomi gave birth to her son, Noah faced complications and had to be revived. Now he lives with cerebral palsy, a seizure disorder and cortical visual impairment. Any limitations he may have, however, are overcome with the help of his mother. Together, they are the dynamic duo. Noah and Naomi do marathons, triathlons, long-distance bike rides and explore the outdoors whenever they can.
Naomi is a family support coordinator at a local children’s hospital, and had a public health education background when Noah was born. Despite this expertise, she was unprepared to navigate the complicated and nuanced Medicaid waiver system.
Noah received Supplemental Security Income (SSI) since birth and was a self-directed COMP Medicaid waiver recipient for a short time. When Naomi’s father died, she inherited a small amount of money and her childhood home.
With the change of financial status, Noah was no longer eligible for the SSI financial support. He should have been switched to the medical-assistance-insurance only support, since his disabilities didn’t change. However, a glitch in the system kicked Noah off of all support, leaving Naomi, a single mother, to figure out how to keep Noah alive. Noah’s extreme medical costs, including the insurance, medications, therapy and doctors’ appointments were way beyond her ability to pay out of pocket.
Even though people often spend years on the waitlist, once Naomi reapplied and reestablished Noah’s eligibility for Medicaid they were approved. In order to get the Self-Direct COMP Medicaid waiver, you have to be Medicaid eligible.
Through this film, Naomi wants to raise awareness about families like hers. She’d love to see state policies that provide people with disabilities easier access to funding without leaving behind casualties to system processes and glitches. In the meantime, she wants families to learn the rules, even if the rules are unfair. It’s important to know the answers to questions such as, can a family member get paid to be a caregiver in Georgia or what happens when my child leaves high school? She encourages people to apply and says: “A lot of families are discouraged because the list is so long, but your loved one can’t receive the waiver if they’re not on the list.”
Check out Naomi and Noah’s story in That’s Medicaid!
Nick Papadopoulos
Nick Papadopoulos has lived in a nursing home for the past four years. He’s only forty-three years old. He was born and raised in Astoria, Queens where after school he worked in real estate until his brother convinced him to move down to Athens, Georgia. He has cerebral palsy, has used a wheelchair since he was thirty-two, and has always led a full life surrounded by friends and family. Among the various titles Nick’s held in his life, he’s long been a disability advocate.
Across Georgia and the entire US, people with disabilities have faced challenges getting and keeping suitable housing. While working at the Center for Independent Living, Nick helped other people with disabilities explore their housing choices. Then he got sick. Unable to work, he was evicted from his home and faced the same challenge he was helping others navigate.
Currently, Nick does not have a Medicaid waiver. He’s on the waitlist for both the Independent Care Waiver Program (ICWP) and the Comprehensive Supports Waiver Program (COMP). In the meantime, every day in the nursing home is a challenge. Budget cuts have led to a reduced quality of life for the people who live there, yet Medicaid is currently paying the nursing facility which can commonly come at a cost higher than the Medicaid waiver.
Despite this long, frustrating battle to get a waiver, he’s never given up on himself or his community. He participated in the film 6,000 Waiting to inspire change in the system. “People with disabilities are musicians, artists, bankers, and scientists with dreams and ideas,” Nick says. “They just require extra help. Without that extra help, those dreams won’t happen.”
Nick is currently looking for a housemate who has the ICWP waiver. Check out his housemate ad as here.
Nick is also starting a business, read about his work with Synergies Work!
Film Partners
Project Funder
The Georgia Council on Developmental Disabilities is the state's leader in advancing public policy on behalf of persons with developmental disabilities. We achieve this mission by sharing information, coordinating public outreach and implementing strategic legislative advocacy. The mission of the Georgia Council on Developmental Disabilities (GCDD) is to bring about social and policy changes that promote opportunities for persons with developmental disabilities and their families to live, learn, work, play and worship in Georgia communities.
Project Manager
L’Arche Atlanta’s mission is to transform lives by building community among people with and without disabilities. Founded in 2012, L’Arche Atlanta has three programs: creating residential homes where people with and without disabilities have a place to belong and a circle of support to assist them in daily life; social activities, such as open mic nights and holiday parties for people across metro Atlanta with disabilities and their families, friends, and supporters; and, advocacy for disability rights and to promote a more inclusive society. L’Arche (“the ark” in French) Atlanta is part of an international federation of 154 communities that celebrates the gifts of people with developmental disabilities.
Film Crew
Michael McDonald
Writer, Editor, and Director 6,000 Waiting
Michael is an author and the filmmaker behind the L’Arche International docu-series, As I Am. Over the years, Michael has had the good fortune of living alongside people with intellectual disabilities in 19 countries. His background is in communications, storytelling, research in the field of disability studies, and non-profit leadership.
Irene Turner
Producer
Irene Turner heads The Storytelling Project and is half of Resurgens Impact. Her mission is to ignite policy and social change through storytelling, creative advocacy, and centering the community’s narrative.
Rhyme & Reason
Cinematography
Rhyme and Reason Films is a production company that specializes in documentaries and brand films that are centered around hope, grit, and the human spirit. It is founded and led by Zach Read and Lexi Read.
Credits
Directed, Written, Edited by Michael McDonald
Executive Producer Tim Moore
Producer Irene Turner
Cinematography & Colorgrade Zach Read, Rhyme & Reason
Story Consultant Lexi Read, Rhyme & Reason, Shannon Turner, StoryMuse
Aerial Cinematography Nicholas Lott
Featuring Ben Oxley, Nick Papadopoulos, Noah Williams, Naomi Williams, John Oxley
Stop-Motion Animation Michael McDonald, Irene Turner
Props Toni Goodly, Manami Kakihara, Ellen Rolphes, Amber Herkey
Special Thanks Eric Jacobson, David Zelles, Julie Calhoun, J. Harold Harrison, Education Commons Medical Simulation Lab, Space Atlanta, Zombie Coffee and Doughnuts, Wuxtry Records, Jolly Roger Tattoos, Disability Link, Willie Cox, John Lewis, Chris Jeffares, Taylandra Ceasar, Kim Goss, The Oxley Family, The Papadopoulos Family, The L’Arche Atlanta Family
Archival footage courtesy of Pond5
Music Blake Ewing-Gravity courtesy of MusicBed, Fuzzy Halo- Good Good Thing courtesy of MusicBed, Sebastian Borromeo- Not At Home courtesy of Artlist, Black Math-Point Blank courtesy of MusicBed, Rooibos-Amongst Others courtesy of Artlist, Slow Meadow-Everything is a Memory courtesy of MusicBed, Swirling Ship-Fixed courtesy of Artlist, Steven Guheinz-Figma courtesy of MusicBed, Blake Ewing- You Me courtesy of MusicBed, Kai Engel- Brooks courtesy of Free Music Archive, Shawn Williams- Illuminate courtesy of MusicBed, Wolftin Productions-Easy Bake Blues courtesy of PremiumBeat, Symphonic Collective-Searching for Answers courtesy of PremiumBeat, Nick Box- Did I Find You or Did You Find Me? courtesy of MusicBed
Contact us
Press, Screenings, General Questions:
info@gcdd.org
(470) 366-5734