All of this actually began about twenty years ago. We were fighting for the opportunity to ride RTS buses. Basically, the transit authority was refusing to put lifts on their buses and expected everyone with a disability to use LiftLine. At one meeting of the Transportation Advocacy Group (TAG), Adele Carlson, a dear friend and mentor, told me we really needed to address the need for community-based services. People were stuck in nursing facilities or were being forced into them because they couldn’t get the services they needed at home.

I thought we had our hands full fighting with the bus company. I hoped I could distract her. I talked about buses. She was relentless and kept pressing, so I told her that as soon as we got lifts on RTS buses, we would work on that issue.

She immediately asked me to promise. I did, but that was not enough to appease Adele. She asked, “Pinky swear?” and raised an eyebrow at me. A pinky swear between us was as sacred as any made in the schoolyard. As we entwined our pinky fingers, we both knew the deal was struck.
Eventually, after years of advocacy and a single protest where one of our crew dragged himself and his wheelchair onto an RTS bus during rush hour, the transit authority finally agreed to put lifts on their buses. It was time to make good on my promise.

The Transportation Advocacy Group morphed into the Center for Disability Rights, still a volunteer group, and keeping my promise to Adele became a three-year project resulting in Early to Bed/Late to Rise, a 200-page report about attendant services. The report, published in 1993, was used to help enact the legislation mandating the Consumer Directed Personal Assistance Program. This report also laid the foundation for CDR’s future.
Adele Carlson at our Drop In CenterBy 1999, CDR had blossomed into an organization with a small budget and dedicated staff. We were running the Consumer Directed Personal Assistance Program and providing other services. We were strong advocates. Adele was now a board member of CDR. At one of our board meetings, as I reported on our advocacy efforts, she pointed out something rather obvious. “CDR is very involved in local advocacy issues and we participate in national advocacy,” she observed, “but there is actually a level of government that falls between the local and federal government.” She paused for effect, “It’s called ‘the state’, and I think we need to do something about their policies that force people into institutions.”

With those words, we began the process of advocating for changes in New York State to address the institutional bias. Our demand was simple.
FREE OUR PEOPLE!

We didn’t know a lot about state policy at the time. What we did know was that the state’s policies didn’t work. Ultimately, through protest, persistence, and good fortune we were able to create the Nursing Facility Transition and Diversion Waiver. It has been a long process (actually years) since the legislation was passed by the legislature and signed by Governor Pataki, but the waiver is finally going to become a reality.
This waiver will allow 5,000 seniors and people with disabilities across the state to use Medicaid funds, that would have otherwise paid for nursing facility placement, to pay for services that support them at home. This waiver will help people get out of nursing facilities and allow others to avoid placement altogether.

Even though the process has moved at a glacial pace, I understand that almost everything is in place to begin serving people. We just need the Department of Health to approve the program manual and the state’s budget people to approve the rates.
CDR has been busy preparing for implementation of this waiver. We have a team of people who are entirely devoted to this work. We have developed a nationally recognized model for transitioning seniors and people with disabilities from nursing facilities back into the community and assisted several hundred people in making the transition – even without the waiver. We are ready.

If you know a senior or person with a disability who wants to return to the community from a nursing facility or wants to avoid nursing facility placement, contact CDR right away. Even though the waiver isn’t operational just yet, we are helping people get ready to enroll when it is. Contact our Transition Department at (585) 546-7510 for more information.

During this lengthy advocacy campaign, Adele passed away. Although she won’t get to see the waiver come to fruition, I know she would be pleased. I also know she would immediately have me promise to address some other social injustice faced by people with disabilities.
And it wouldn’t be just a run-of-the-mill kind of promise. It would be a pinky swear.