As filmmakers publicize the project during award season and an upcoming PBS airing, Barkan has seized on his next chapter: a push for Congress to pass the Build Back Better Act, a centerpiece of President Joe Biden’s agenda, which includes provisions to address home health care.
In a Q&A with Not Going Quietly filmmaker Nicholas Bruckman and Sen. Elizabeth Warren (D-MA), Barkan said that he’s focused on residential and community care “because I rely on 24 hour care to survive and believe that every person should have the right to live safely and with dignity in their homes. Right now that isn’t the case for nearly a million people who are the wait list for home care and also for our vastly underpaid workforce of professional caregivers.
The legislation would provide $150 billion to address the backlog in home care needs via Medicaid, as well as to boost pay for the workers, but that in itself is less than the $400 billion advocates say is needed to address the problem.
But the prospects for Build Back Better are uncertain, as the Senate needs every Democratic vote to advance the legislation with the expectation that no Republican will vote for it. Sen. Joe Manchin (D-WV) has expressed misgivings for certain provisions and for the legislation’s scope, citing inflation. The $1.9 trillion version of the legislation that cleared the House last month likely will be scaled back, although it’s unclear whether that will include the home care provisions.
The movie, with producer Amanda Roddy also director and Bradley Whitford and the Duplass brothers as executive producers, follows Barkan as he continued his activism after his diagnosis. One of the story arcs: As Barkan starts to lose his voice, he becomes a more influential figure. Barkan now speaks via eye gaze technology. In recent months, Barkan has authored op eds in publications like The New York Times.
The documentary itself will premiere on Jan. 24. ICM Partners is hosting an award season screening on Monday, along with the Q&A.
“I was dealt a tough hand, five years ago, when I was diagnosed with ALS,” Barkan said in the Q&A. “But many people are dealt tough hands. Our nation is dealing with tough hands right now, and the question is how we respond to that adversity.”
A clip from the Q&A and the documentary is below.
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