Yesterday, CDR received notice that we finally had successfully enrolled a person in the Nursing Facility Transition and Diversion Waiver (some people may be more familiar with calling it the Nursing Home Transition and Diversion Waiver – I’ll get to that in a bit). After nearly a decade of advocacy and work, we have one person all set to begin receiving needed services and to escape institutional placement! This is the first person enrolled in the waiver in Monroe County. Many more will be following soon – just in time for the holidays.

As a group, people with disabilities and our allies in the senior population have been advocating for this waiver for nearly a decade. We have taken the concept from “just an idea”, into and through the legislative process, into an application to the federal government and then waiting for implementation by NYS. Well, we never really wait for anything… We pushed hard for NYS to implement the waiver. We fought with the Federal government to eliminate barriers there as well.

In the last few months, a lot of people have worked very, very hard to find the magic formula to get people approved for the new waiver. There is a lot of frustration around the state because the process hasn’t been as smooth as we would have liked, but we have had a major victory today. And it will be followed by many more. And due to the tremendous work of many people at CDR and our colleagues across New York (and even some people in the Department of Health!) many thousands of people will live independently, in freedom, in their own home, instead of being forced into a facility.
For me, there are a number of defining moments along this path.

I remember getting a call from Trilby de Jung at Empire Justice Center late in the afternoon on the day before the NYS Senate was conducting one of its Medicaid Reform Panels in Binghamton. Trilby had a call from another colleague who had been added to the panel at the last minute. This colleague didn’t know what to say about long term care reform, but Trilby knew that we did.

CDR was already planning on bringing about 40 people to the panel, so we moved ahead with that. When the Senators gave the microphone to our colleague from Binghamton, she quickly passed the mic to me and then I passed it to Bruce Darling, CDR’s Executive Director. The Senators fumbled to regain control of the meeting as Bruce launched into explaining that what New York needs to do is provide more community-based services in order to allow people to live in freedom and save the state money! Whether he believed Bruce or he just wanted to regain control of the meeting, then Senator Ray Meier said he meet with us.

When we went to meet with Senator Meier, I remember the tide of the meeting shifting when he kicked his feet up and said something to the effect of “Let’s talk legislation”. A few weeks later, legislation was introduced to create the Nursing Facility Transition and Diversion Medicaid Waiver and a few more weeks later it was passed by the Senate then the Assembly.

For some time, the legislation languished, waiting to be sent to the Governor for signature or veto. No one really knew what Governor Pataki would do with the bill. Many staff in his administration had opposed us all along the way, but Senator Meier was a solid fiscal conservative Republican – close to Pataki. When the legislation was finally sent to the Governor, we got a crash course in NYS civics that I will never forget. What’s the difference between a 10 day bill and a 30 day bill? For which bills is a pocket-veto in affect and which bills automatically pass if no action is taken? For a 10 day bill, is that explicitly business days, or does the weekend count? What about Holidays? Is Columbus Day a Holiday?

We learned the answers to all of these questions and ultimately Governor Pataki signed the Nursing Facility Transition and Diversion bill into law. The waiver, as it was passed, has 5,000 slots to serve people. We can add more if needed.

You might be asking, “Why does Chris keep saying “facility” when the Department of Health says “home”?” Well, let me tell you. I wrote a lot of the legislative language for the waiver and what we wrote, and what was passed and eventually signed by Governor Pataki was the Nursing Facility Transition and Diversion Medicaid Waiver. Simply, if you don’t want to be there, it is not your home. It’s a facility. And our legislation recognized that point.

The Department of Health instead uses kid-gloves to talk about their buddies in the Nursing “Home” industry. We’d rather call them warehouses. Seniors and people with disabilities are the stock on the shelves. But that’s changing.

Those of us in Systems Advocacy have persisted in creating this waiver and now those who provide services and work one on one to put policy into action are making the promises of the Nursing Facility Transition and Diversion Waiver a reality for one person at a time.

If you or a loved one need assistance staying independent, or getting out of a facility to return to independence, please contact us – (585) 546-7510.