Reflecting on This Week’s (week of September 25) Healthcare Fight: An ADAPT Perspective

Dear Access Living friends and allies,
 
For the first time in a long time, I would like to write you not with an action alert, but with a reflection about the grassroots disability action on site in Washington, DC this week. For more than nine months, thousands of disability advocates like you across the country have fought tooth and nail to protect Medicaid and other health programs that our community needs. It has been a fight over life and death, causing daily anxiety for countless people. Access Living staff have been in the thick of fighting for our healthcare and long term services and supports every day.
 
Over the last several days, I was privileged to join my colleagues with ADAPT for the Fall National Action in Washington, DC.  Outside my role as Director of Advocacy, I am also a longtime member of Chicago ADAPT, which fights for Medicaid home and community based services. ADAPT is an all-volunteer grassroots organization led by and for people with disabilities, with chapters in many states. Access Living has often partnered with ADAPT in advocacy efforts. ADAPT's slogan? "Free Our People!" ADAPT has been very visible over the summer with dramatic sit-ins and arrests in the offices of a number of members of Congress, in working to defeat the various versions of Obamacare repeal, which carried massive cuts to Medicaid.
 
Starting this past Sunday in DC, ADAPT carried out a series of hard hitting actions. On Sunday, we paid a group call on the home of U.S. Attorney General Jeff Sessions, to bring focus to the Department of Justice's weakening stance on disability rights enforcement. On Monday, we waited for hours in line to attend the U.S. Senate Finance Committee's hearing on the Graham-Cassidy Act. As the hearing began, a group of us shut it down by chanting "No Cuts to Medicaid, Save Our Liberty!" Over 180 ADAPTers and other advocates were arrested for disrupting the hearing, which was then canceled. On Tuesday morning, ADAPT then occupied the offices of the four U.S. Senators who sponsored the Graham-Cassidy bill, to send the message that the bill was not acceptable.
 
We then headed to the headquarters of the U.S. Department of Health and Human Services to demand a meeting with Secretary Tom Price
to ask for a commitment to improve, not weaken, Medicaid home and community based services . As we occupied the building's entrances, we got word that Senate Republican leaders had decided that the Graham-Cassidy bill was dead. We celebrated by keeping up the pressure on Secretary Price. Eventually, a couple of staff came down to meet with us, but could promise nothing substantial. So, ADAPT closed in on the entrances and over forty more people were arrested and cited with blocking the doors.
 
ADAPT however does not give up, and knows where the buck stops.  HHS is currently working on agency-level health reform that could prove even more damaging than the Graham-Cassidy bill.  Wednesday morning, we showed up 200 strong at Secretary Price's DC home and reiterated our demands . After making our message clear, we spent the rest of the day visiting Congressional offices to ask for support for the Disability Integration Act (DIA) . This legislation would make Medicaid home and community based services available to people in every state who meet a nursing home level of care. Medicaid requires that those who qualify will get access to nursing homes, but it is not a requirement that those people also have access to home services. The DIA would fix that and is currently supported by over 600 organizations, with zero opposition from either Democrats or Republicans.
 
It has been a powerful, powerful week. But what I really want you to know is that while you may have seen news stories and photos about ADAPT's actions this week, it takes a tremendous amount of labor to support and organize over 200 people with a range of disabilities for the ADAPT actions. ADAPT actions are NOT conferences. They are planned by a motley crew of grassroots advocates for the most part. They can be physically and mentally strenuous, and because they occur over multiple days, one has to ask, what keeps it all working? And the answer is that everybody pitches in to support each other where possible. Things ADAPTers have to troubleshoot on site around the clock include:
 
---broken wheelchairs or equipment that fails to fully charge
---ensuring communication access for people who can't hear or speak or process information
---supporting people with seizure issues
---guiding those with vision issues
---assisting those with oxygen tanks to keep the tanks functioning, and that those with asthma have their inhalers and get space to get through attacks
---sorting out where to go to the bathroom in public spaces when over 100 folks have wheelchairs or scooters
---ensuring people can bathe
---getting people dressed/undressed
---keeping people fed, especially those who need help feeding themselves
---helping people who run out of their meds figure out where to get a re-supply
---assisting people to empty cath bags and coleostomy bags
---finding people to push wheelchairs up hills, or drive power chairs when their occupants become too tired to manage the joystick
---doing the emotional labor of helping people process what is going on, and resolve interpersonal issues, and cue them on social situations
---working through anxiety or panic attacks
---taking people to the hospital and being there to help advocate for their needs while they are in crisis
 
From the moment ADAPT arrives at a National Action to the moment it leaves town, this work is 24/7 and it is truly an amazing effort. Someone asks you to fill a water cup, you help. Someone asks for help putting on their shoes, you help. Someone asks you to help wipe their face, you help. On my part because I am Deaf, I had many people who helped me make sure I understood what was going on around me, including whatever chants we were doing, and who helped be supportive when I got stressed out trying to lipread people.
 
Thus, what I really want you to know is the nature of that difficult and amazing teamwork that makes the onsite ADAPT actions incredible feats of community organizing. ADAPT actions are hard, and some opt to participate offsite or for only a day.  Yes, ADAPT pushes hard, and makes dramatic action for change, but at the end of the day the advocacy is possible because it is a labor of love. And that is true not just for ADAPT but for the whole galaxy of disability advocates at countless organizations that made the fight for disability rights in healthcare MATTER in a way we have never seen in history before.
 
You were part of this labor, no matter where you were. Thank you.
 
Amber Smock
Director of Advocacy, Access Living