No Matter What You Call It...It's Still a Cap!

38 activists from the Center for Disability Rights joined over 50 other people with disabilities from around the state, converging on Albany on Wednesday, March 10, 2010, to protest Governor Paterson's proposed budget caps on personal care for people needing more than 12 hours of care per day.

Upon arrival, we broke up into teams of 10 - 15 people and visited the office of every member of the state legislature. Decked out in bright orange t-shirts and baseball caps that read, "No Matter What You Call it...It's Still a Cap", we were very noticeable as we scoured the Legislative Office Building.

Armed with fliers and baseball caps, our members spoke to staffers and sometimes, the legislators, themselves, putting a human face on the issue by telling how these caps on personal care will send us into costly institutions. At the end of each visit, the legislator, or their staff were presented with a beautiful pledge sheet that they were asked to sign. It stated that the legislator would pledge to reject the Governor's budget cuts to personal care. While most expressed support, three legislators - Senator Bonacic, Senator Huntley, and Assembly Member Towns signed the pledge on the spot. The rest will need follow up back home in their districts.

Each office was also left a bright orange baseball cap with our message on it, so that they would not forget why we were there.

After our visits, we gathered for our traditional lunch from McDonald's, then headed upstairs to the Senate Chambers, where state senators were preparing to enter into a session to address the budget. The time had come for the senators to get a real lesson on how the caps would affect our community!

Activists formed a gauntlet down the hall and the entrance leading to the Senate Chambers. Huge banners mysteriously appeared, made from shower curtains reading, "Personal Care Is a Civil Right", "Care, NOT Caps", and "Don't CAP My Freedom", among others. At the end of the hall was a banner cut to resemble a jail, with the words, "Nursing Facility" at the top. This banner would figure prominently in what happened next.

Loud chanting that reverberated throughout the entire floor greeted senators and their staffers as they entered the chambers. "No Cuts, No Caps!' we chanted as we handed out fliers and baseball caps. "No Matter What You Call it...It's Still a Cap!" filled the ears of the senators as they began their session.

At times, an announcement would ring out, "Let us show you what we mean", and people with disabilities would line up before three individuals with placards with the acronym for three different programs that the state is suggesting that they go to once their services are capped. These programs, Long Term Home Health Care Program (LTHHCP, also known as Lombardi), Managed Long Term Care plans (MLTC), and Nursing Home Transition and Diversion waiver (NHTD) have built-in hourly caps or, due to administrative constraints, are inappropriate for those needing more than twelve hours of care per day.

As each advocate went before the person with the placards and asked for service, they were told, "Sorry, you're capped" or "Denied!" and sent to the next person with a placard until they were directed to the nursing facility "jail" at the end of the line. After several rounds of this theatre, a gentleman in a business suit (he looked like a legislator, but was actually the Executive Director of Action Toward Independence in Middletown) approached the nursing facility "jail", and signed our Pledge, signifying that the legislature had rejected the budget cap on personal care, and freed the captive activists.

Toward the end of the day, after the senators had been in session for some time, the Sergeant-at-Arms came out to ask that we stop the chanting or he would have to have us removed. He said that we could continue to pass out fliers and hats, so we agreed to his request. In an interesting turn of events, word reached us that some of the senators were asking if we had any more of our caps to hand out. It appeared that at least some of them had gotten our message: No Matter What You Call it...It's Still a Cap!