Check out this video on the state budget fight in New York: http://www.cdrnys.org/video/proposedbudgetYNN.html. The video is captioned.
On Monday, February 1st, a group of New York disability rights advocates met with the Governor Paterson and key staff regarding his budget proposal to cap personal care at 12 hours per day.
After delays with security, we started the meeting with quick introductions and a brief context for the meeting. At about that point, the Governor walked in; we did a quick round of re-introductions and got back to business.
Throughout the meeting, the Governor played a calming role as his staff and the advocates argued. He expressed a willingness to admit that their proposal might have negative consequences that they had not intended. The advocates poked holes in the administration's proposal, but the Governor would intervene and say that they had already admitted that the proposal might not be perfect, suggesting the group "move forward"... then his staff would start defending the proposal again.
Michelle, who is directly affected by the cut, explained the effect that this proposal would have on her. She explained that just days before giving birth to her daughter, she got her spinal cord injury and became a quad. She left the hospital to live with her mother who was now taking care of both her and her newborn daughter. She wasn't ever able to get the personal care she needed in Seneca County so she moved into a less accessible apartment in Ontario County where she could finally get services. She pointed out that she now must take a 45-minute drive to take a shower, but that's how important her independence was to her. She emphasized that people who get this level of service really need it, and it clearly wasn't that easy to get. She spoke about how she was finally able to raise her own daughter and be a mom. And she spoke about how she feared that losing the services would mean she would lose her freedom... and her family.
So we asked the administration why they hadn't used the cost-savings proposals that we had developed in November, long before any of these cuts were proposed. Our proposals didn't eliminate community-based services. Instead, they actually promoted the independence of people with disabilities by maximizing community-based approaches and cost-effective consumer-directed services. We acknowledged that our original proposals may have been aggressive, so we had ratcheted them down. Even so, we still projected $30 million to $90 million in savings for the first year, easily covering the saving the administration expected from capping personal care.
In a nutshell, our proposals said that the state could save money by moving people from nursing facilities to the Nursing Facility Transition and Diversion Waiver. The staffers felt that our target of 1,300 people statewide was unrealistically aggressive, but never explained how they felt nearly 5,000 people could be enrolled in NYC alone under their proposal. They also argued that daily savings rate we used was too high, even though our revised version was taken straight from the DOH's TBI Waiver report to CMS.
The staff also complained that our proposal assumed that we would close nursing facility beds, but there isn't the political will to make that happen. We argued that the state, particularly in such difficult fiscal times, shouldn't prioritize the institutions over people. At this point the Governor stepped in and said that they wanted some time to review our proposals. We urged them to eliminate the 12-hour cap in their 21 day amendments.
The pessimistic side is that the staff seemed committed to the cap.
The optimistic side is that they agreed to look more closely at our revised proposal. The Governor has clearly made this something they have to address. They know that they are going to be flambéed every step of the way with the 12-hour cap.
We don't know what will happen, but whatever happens, this is only the start of the process!
To learn more about CDR, see http://www.cdrnys.org/.
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