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March 15th is the Ides of March, a day dedicated to the god Mars – the Roman God of War. So it’s fitting that disability rights advocates and activists from all over New York State would spend the day DEFENDING OUR FREEDOM! About 250 disability advocates came to the Capitol yesterday and could not be missed wearing bright orange shirts that read “Our Homes, Not Nursing Homes” and “DEFENDING OUR FREEDOM”. The day was organized by the New York Association on Independent Living (NYAIL), the Consumer Directed Personal Assistance Association of New York State (CDPAANYS), and NYS ADAPT.
The group gathered on the 2nd floor of the Capitol in the War Room and began a rally talking about the negative impact of proposed budget cuts and the potential positive impact from pursuing our policy proposals.
Speakers included:
- Tony Caputo from Concepts of Independence and the Consumer Directed Personal Assistance Association of New York State (NYC)
- Bruce Darling from NYS ADAPT (Rochester)
- Jackie Datkin from South Shore Home Health Services (Long Island)
- Maria Dibble from Southern Tier Independence Center (Binghamton)
- Susan Dooha from CIDNY (NYC)
- Sim Goldman from Disability Advocates (Albany)
- Sue Hoger from the Resource Center for Accessible Living (Kingston)
- Sally Johnston from Enable (Syracuse)
- Andrew Pulrang from North Country Center for Independence (Plattsburgh)
- Babi Satzman from Independent Living Inc. (Newburgh)
- Mel Tanzman from Westchester Disabled on the Move (Yonkers)
I’m sorry if I missed folks, but the day is sort of a blur…
There were intense negotiations with the Governor’s staff leading up to the event. While the group was chanting in the War Room, Lieutenant Governor Duffy came out to address us, on behalf of Governor Cuomo, who was not in the Capitol. He announced three big wins for the disability rights community!
First, the Lt. Governor announced the State’s full intention to apply for the Community First Choice option. We understand there will be a press release from the Governor’s Office on this very soon, but we heard it first in the War Room. Getting this commitment is a HUGE Victory for our state! We have been fighting to end the institutional bias more than 20 years. Implementation of the Community First Choice Option levels the playing field and will finally assure that people will have a REAL CHOICE in getting long term services and supports as well as new opportunities for consumer direction.
Second, the Lt. Governor also announced that the regulations for the Consumer Directed Program will be promulgated by April 1st. The program has operated loosely without regulations and we are eager to see them finalized as we have strongly advocated for expanding the family members who can be paid.
Lastly, Lt. Governor Duffy told the group we have the Administration’s commitment that they will work with us as the Medicaid redesign process moves forward, particularly in the rollout of Medicaid Managed Long Term Care. Having the voice of the disability rights community can help ensure that the redesign of Medicaid supports the independence, integration and autonomy of seniors and people with disabilities.
After lunch, the group moved to the third floor to direct our energy at the Legislature, which was scheduled to pass their respective one house budget bills. Groups surrounded all entrances to the Assembly and Senate chambers as legislators were entering session. People distributed fliers with nonstop chanting. Our presence could not be missed – bright yellow and orange fliers could be seen on the desks of legislators, while a number of advocates in neon orange shirts sat in direct line of sight of the Legislators in the gallery of the Assembly Chamber. While this was happening, T.K. Small, Nadina LaSpina and Diane Coleman tried to meet with the Speaker, but could not get an audience with him.
ADAPT members went into the Assembly Chamber. Initially, they were told to leave but held their ground. State troupers were called in, but ADAPT held firm. While negotiations happened between ADAPT and the Assembly, T.K. continued to try and reach out to key members, including Dick Gottfried, chair of the Assembly Health Committee, but Gottfried said he was too busy to meet with ADAPT. Eventually, it was decided that the ADAPT group could stay.
The Assembly started session and acknowledged (expected) visitors and presented awards. As they began the process of considering legislation, ADAPT began chanting. This REALLY got the attention of the Assembly. As the group chanted “Our Homes, Not Nursing Homes”, the Assembly session came to an abrupt stop. Legislators came over to the group to negotiate and ask the group to stop, including Barbara Lifton, Joan Millman, and Kevin Cahill, and others.
Harry Bronson, an openly gay Assemblyman from Rochester, said that this wasn’t the way to make our statement and urged Bruce to get the group to quiet down. Bruce responded by explaining that like the LGBT community the disability rights community needed to do everything it could in the name of justice, including direct action. He said, “We are doing this in the spirit of the Stonewall drag queens who were disenfranchised and had put up with it long enough. We are in the same position and standing up for OUR rights.”
The group was informed that continuing to chant would result in arrests. They started chanting “I’d rather go to jail than die in a nursing home” and held their ground. After it was clear that ADAPT wasn’t leaving, Anita Cameron and Diane Coleman led the group in singing “We who believe in freedom”. This was a perfect song to go with our tee shirts that said we were “DEFENDING OUR FREEDOM”.
The singing resonated with folks. People began recording the group’s harmonics and taking video with their cell phones. One older African American woman, who seemed visibly moved by the action, joined the group, called someone and before holding the phone toward the group said, “You HAVE to hear this!”
As the group continued to chant, the Assembly offered to have Assemblymember Dick Gottfried meet with the group in a conference room outside the Chamber. ADAPT accepted the offer. ADAPT members filed out of the Assembly chanting “The people… unitied… will never be defeated!”
The meeting with Assemblymember Gottfried lasted an hour and focused on our concerns regarding the mandatory enrollment in Managed Long Term Care (MLTC) for people with disabilities. The advocates in the room, including Susan McCormick (Long Island Center for Independent Living/CDPPANYS), passionately articulated their concerns about MTLC, particularly for those with the most significant disabilities, and the impact the program could have on the Consumer Directed Personal Assistance Program.
Unfortunately, the Assemblymember wasn’t receptive to the concerns. Instead, he spent most of the time defending the existing proposals and presenting policy arguments to the room full of Medicaid recipients. The room got heated as advocates raised concerns about the potential for cuts in hours. As people got frustrated with his answers, the murmurs grew louder. Eventually, the Assemblymember asked “Can everyone in the room shout at the same time?” Which prompted the group to chant, “People, Not Patients! We’re people, not patients!” Although folks had hoped for a productive discussion, the meeting turned into an unexpected accountability session!
It’s clear that this was WAY MORE than an ADAPT action. It was a massive cooperative effort involving a LOT of people. Starting late LAST YEAR, Melanie Shaw, NYAIL’s Executive Director, pulled together a great health policy group that has worked for months laying the groundwork for the budget process and then facilitated the planning calls for this action. In addition to other folks who are mentioned here, I want to make sure that Denise Figueroa (Independent Living of the Hudson Valley) and Heidi Siegfried (CIDNY) are acknowledged for their work on that group as well.
Finally, I’d like to acknowledge Lindsay Miller (NYAIL) who not only worked on policy and the action, but also pulled together a lot of the narrative for this email, and of course I can’t forget Leah Farrell (CDR) who has managed to research, write, and edit a ton of policy while balancing her responsibilities as a new mom and helping us organize the day’s events.
Our partners at NYAIL (and Kevin Cleary our Lobbyist) have already followed up with the Governor’s staff regarding the Lt. Governor’s comments and commitments on behalf of the Governor.
Here are links to the press coverage that we’ve seen so far.
http://www.youtube.com/watch?v=w2bhrjlU6yI
http://blog.timesunion.com/capitol/archives/60655/advocates-shut-down-assembly/
http://www.buffalonews.com/city/politics/article367865.ece
http://wnyt.com/article/stories/S2019058.shtml?cat=300
In case you noticed that a major city in New York wasn’t listed in the speakers at the Rally… Buffalo was NOT missing in action. The were definitely IN ACTION! While folks were rallying in Albany, Western New York Independent Living organized a rally in Buffalo! Over 270 folks marched on the regional State office building. Thanks to Melissa Golpl (WNYIL) for sharing information about their day! Here are a couple links to the stories in the local news (again courtesy of Melissa):
http://www.wivb.com/dpp/news/new_york/Cuomos-budget-protested-in-Buffalo
http://www.wkbw.com/news/video/Medicaid-Rally-in-Downtown-Buffalo-118046339.html
The budget process is far from over. We will also continue to advocate with the legislature through the budget negotiations. Undoubtedly we will call on people to take action so stay tuned for action alerts in the upcoming days so we can continue DEFENDING OUR FREEDOM in New York!