Day two of the Albany action began with the cooperation of Mother Nature -a sunny day, not too hot or too cold, and none of the logistical dramas like the previous day. ADAPT marched from our hotel to the New York State Department of Health for a meeting with Bruce Rosen, the MFP (Money Follows the Person) Project Coordinator, and Coordinator of the NFTD (Nursing Facility Transition and Diversion) Waiver, and Stuart Rosenblatt, Director of the Division of Planning and Policy. We wanted to confirm that the DOB (Division of the Budget) actually sent the NFTD reimbursement rates to the Department of Health. We also had some tough questions for them regarding consumer direction in the NFTD Waiver, the Cash and Counseling model, and Long Term Care Restructuring.
All 43 of us crowded into the small conference room with Bruce Rosen, and immediately, the questions began. Did DOB send the rates? Yes. When would the rates be posted to the eMedNY website? No later than mid July, was the answer.

Ok, the easy questions were over. Now began the tough ones.

We asked, “What are DOH’s plans for adding consumer direction to the NFTD Waiver?”, and were told that there would be consumer direction unless the person needing personal assistance services also had an unmet need for supervision and oversight. Under their definition, “unmet need” means that someone needs supervision and there is not a 24/7 live-in family member. They did agree, however, to look further into how consumer direction could be added to the NFTD Waiver and work closely with the advisory group on this issue.

We then asked about the current status on the development of a cash and counseling model. According to DOH, this was still being studied. They knew that several other states had such a model. Mr. Rosen asked if ADAPT would reach out to our chapters in other states, and gather some information on how these states implemented and managed their cash and counseling model.

Stuart Rosenblatt then joined us. He introduced himself, and told us that he’d only been in his position for three weeks, but had previously worked within the developmental disabilities system, so he was used to working with self advocates. That was the perfect segue into Long Term Care Restructuring, and getting consumer and advocate representation on stakeholder workgroups and committees addressing long term care, as well as the MISCC (Most Integrated Setting Coordinating Council). We wanted to know DOH’s plan to reach out to consumer and advocacy groups to get a different perspective from the provider agencies and associations. We want DOH to get serious about having consumers guiding this process.

Some in our group began telling their stories about how they got out of institutions, how they overcame situations where decisions were made about them without their input, and the absurd barriers preventing some of them from being eligible for services through various waivers. We spoke of the blatant, continuous efforts of our county’s Long Term Care Council (funded as a New York Connects Point of Entry) to exclude disability advocates and consumers from participating. Finally, we asked what efforts were being made to expand involvement of consumers and advocates in the DOH Restructuring Advisory Group, identified as the MISCC stakeholder group, how are they planning to implement the promise of the MISCC, and further, how would DOH use this workgroup to address the critical Olmstead issues affecting seniors and people with disabilities? Rosenblatt’s response was that he was only three weeks into his new job and has never attended a MISCC meeting. He asked that we give time to attend the upcoming MISCC meeting in July, and get a feel for it. Both he and Bruce Rosen committed to work with us to address and other issues, and thanked us for coming.

ADAPT will certainly hold DOH to its promises!

ADAPT was joined by our friend, Melanie Shaw, of NYAIL (New York Association on Independent Living), and when the meeting with DOH was over, we headed over to her office (which is on the same floor as DOH) for a lunch of ADAPT steak, A.K.A. McDonald’s cheeseburgers, a tradition with us. For the record, we also provided salads for the vegetarians…

After lunch, we prepared to hit our next target, the State Education Department (SED). Fortunately, for us, their building was right next door! Our challenge would be to get all of our people into the building via a side entrance and get past security. Our fastest and most fearless folks were at the front of the line, and a couple of our strong folks were prepared to hold the doors. I’ll admit, I said a couple of words to the ADAPT gods and Ancestors, who at times, have been lavish with their gifts. “Get us in. Get us in. Get us in.”

I needn’t have worried. As soon as the door was open, I heard “GO! GO! GO!” I remember being pushed down what seemed to be the longest hall I’d ever seen, and flashing back to our hit on HHS (Health and Human Services) in Washington, DC, in April. The next thing I knew, we were in front of the elevators in the main part of the building chanting, “Who do we want? Commissioner Mills! When do we want him? NOW!

Within seconds, there were security and SED personnel around trying to get us to stop chanting. Security guards kept tapping me on the shoulder trying to get me to listen to them. I ignored them and chanted louder. I felt an insistent tapping on my shoulder. I chanted louder. More tapping. I chanted even louder. Tap-tap-tap. I chanted even LOUDER. Finally, I saw a woman’s face with blond hair right in my face. “You can talk to me”, she said. Knowing quite well what the answer would be, I asked, “Are you the Commissioner” “No”, she responded. Without missing a beat, I bellowed, “WHO DO WE WANT? COMMISSIONER MILLS!” “WHEN DO WE WANT HIM? NOW!”

We kept this up for a few minutes, then, we let the blonde lady speak. It turned out that she was Rebecca Cort, the Deputy Commissioner. She didn’t know where the Commissioner was, but they would get him. Meanwhile, they wanted us to clear a path. With their commitment to a meeting between us and Commissioner Mills, we cleared a path. A very short time later, a guard came back to tell us that the Commissioner would meet with us, but wanted the building cleared, saying that we were a fire hazard. We have heard that excuse before. They insisted we would lose the meeting with the Commissioner if we refused to leave, so after consultation, we decided that the meeting was more important than the security’s weak excuses for why our people had to leave the building. Four of us stayed to meet with the Commissioner. The rest waited outside. Of course we had a plan if things didn’t go well…
We met with Commissioner Mills, Deputy Commissioner Rebecca Cort, some other SED upper echelon staff including Ed Placke, who visited CDR the previous Thursday.

I’ll review our demands and their respsonses:

Demand 1: Immediately restore the funding cut form the State’s Independent Living Network using Social Security Trust Fund dollars

Commissioner Mills agree to consider this option although he was concerned that the State Legislature would cut IL funding in the future and expect SED to pick up the slack. We suggested SED might fund a “special project” at each center rather than state that they were restoring base funding.

Demand 2: Add the Center for Disability Rights to the state’s independent living network as the Center serving Ontario County, and fully fund this Center using Social security Trust Fund dollars.

The Commissioner stated that the Board of Regents did not like the idea of identifying one specific county to establish a new center, as they would like to see every county served by a center. We agreed that we needed to have a unified approach and it seemed like we would be working with Ed Placke to figure that out.

Demand 3: Meet with the Executive Committee of the State Independent Living Council (SILC) and develop a mutually agreeable plan to reverse critical policy changes which have disempowered the SILC and people with disabilities who participated in the development of the current State Plan for Independent Living.

According to SED, the problem is with the Federal government. They said that they received instructions from RSA but agreed to show us that information and work with us to get the federal government to reverse this position, giving the SILC back its autonomy. Options for working together included a letter from the Commissioner or the Governor as well as going together to NY’s Congressional representatives.

We pressed SED on why they didn’t even ASK the State Comptroller’s Office about sole source contracts for the SILC and its subcontractors. Rebecca Cort said that SED had “a lot” of other sole source contracts they wanted approved and they probably were at the limit that the Comptroller would approve.
We talked about how the SILC was cut out of the process for developing the RFPs. Rebecca Cort asked us if we would rather be given more time for input but realize there would be a gap in meeting the objectives. We suggested other alternatives, but she just kept repeating the same question refusing to consider these potential solutions. They agreed to follow up with the SILC. I just hope that SED is willing to consider other options when they do that because it seemed our community was working really hard in good faith to find a solution.

Demand 4: Address the problems with fiscal management within the State Education Department which have significantly delayed payments to the State Independent Living Council and the Independent Living Centers and develop a plan to facilitate timely payments to these organizations.

Commissioner Mills stated that the payments were late due to the fact thet SED didn’t have the funds to make payments, but promised that the money was now released and that the funds would be sent by next week. He did not anticipate any further problems with payments arriving on time.

Finally, Commissioner Mills also agreed to set up another meeting with ADAPT and other disability leaders to continue these discussions and work with us to resolve some major issues.

It was great two days in our state capital and I was glad to spend it with such a great group of activists!