Updated: Jun 22, 2021
For people with disabilities, being able to remain in the community after high school isn’t as easy as it should be. For many, lack of personal resources and family connections results in people being placed in nursing homes and care facilities, which the federal law requires states to fund as mandatory benefits.
Medicaid waivers that provide optional benefits like home and community-based services are available in a majority of states. These waivers “help provide services to people who would otherwise be in a nursing home or hospital to receive long-term care in the community.” While community-based care is cheaper than providing long-term care in nursing homes, it’s not legally required, making the waivers a necessity in order for people to receive the funding for it.
However, many are unaware these waivers even exist, and those who are aware often find themselves on waiting lists that take years to get through.
“6,000 Waiting,” a documentary from the Storytelling Project that was made possible through a partnership between the Georgia Council on Developmental Disabilities and L’Arche Atlanta, chronicles the struggles of three people as they go through the process of being on Georgia’s Medicaid waiver waiting list, which had 6,007 names on it during the time of filming and is now estimated to have around 8,000 names.
“We wanted to tell it from a very human perspective,” said Michael McDonald, the writer, director, and editor of the film. “We wanted to say ‘what’s ultimately at stake here?’ It’s people’s lives. It’s their futures. It’s their pasts.”
And the documentary does just that. With a deep-dive into the lives of these people and their families, “6,000 Waiting” makes you painfully aware of the injustice in our system, which makes it so difficult for people with disabilities who need daily support to exercise self-determination and live in inclusive communities.
The reality that people with disabilities have such little support after leaving school is a harsh one, but one that needs to continue to be explored. The truth of the matter, according to the film, is that eight young Americans are forced into nursing homes every day. That’s eight people losing their passions, their friendships, and their freedom every single day because there is not an expectation for state governments to provide community-based support for those with disabilities.
One of the people the documentary follows, Nick Papadopoulos, lives out this harsh reality. Nick is only forty-three years old, but has been in a nursing home for the past four years after getting sick and being evicted from his home because he was unable to work.
While Nick awaits his chance to receive the waiver, he struggles in the nursing home. Quality of life there has been reduced due to budget cuts, and it’s now impossible for him to fulfill the dreams and aspirations he has. The film especially shows how the loneliness affects Nick. Despite it all, he refuses to give up and holds onto the hope that he will eventually make it through the waitlist and get his life back.
“It’s a scary thing,” McDonald said when we discussed the film with him and asked about the nursing homes. “It’s the new institution.”
Irene Turner, the producer, agreed that going to the nursing facilities during the filming process was especially hard and admitted she even cried after leaving them.
“It’s not state asylums… but it’s still pretty bad,” she said. “It’s not a way that anyone should live their life.”
As advocates for inclusive education, with research showing that inclusion leads to better post-school outcomes, we need to be able to look beyond schools and see how inclusion continues afterward. We need to take on these issues, discussing how we can change the world in every aspect to make it more inclusive and accessible. We need to continue to advocate for systematic change on every level.
Here is how you can help:
WRITE! Contact your legislator to advocate for increased funding for Medicaid waivers in Georgia or your home state (most states have a waiting list!). Find out who your legislator is here and write to them advocating for increased funding for Medicaid waivers. Here is a template you can use.
JOIN! Join GCDD’s Advocacy Network to receive advocacy alerts, calls to action, and legislator tracking. Sign up here.
Also, learn more about how to Get Nick Out!
Kayla Kingston is the Communications Specialist for MCIE. A recent graduate of the University of Dayton, she loves reading, writing, and supporting all things inclusion.