CEO of The Center for Disability Rights breaks down ableist assumptions
By Mike Costanza
The Center for Disability Rights advocates for the rights of the disabled and provides programs that meet their needs.
Founded in 1990 without a budget or paid staff, the nonprofit now has more than 100 people on its payroll, along with many volunteers, and a current budget of about $45 million.
CDR has a 22,000-sq.-ft. headquarters in Rochester, service offices in Geneva and Corning and offices in Albany and Washington, DC that address issues regarding governmental policies toward the disabled. More than 10,000 people across the state benefited from its services in 2020 alone.
CDR co-founder, president and CEO Bruce Darling spoke to In Good Health about his organization, the challenges it faces and the ways it intends to overcome them.
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Q. In a few words, what is CDR’s mission?
A. The Center for Disability Rights works for the full integration, independence and civil rights of people with disabilities. We do that through direct services for folks as well as advocacy, both individual advocacy and systems advocacy.
Q. According to CDR’s website, it operates via a “peer model.” What does that mean?
A. Our services are provided by people with disabilities for people with disabilities. We actively recruit for folks with disabilities. We’re also working to identify BIPOC (Black, Indigenous and people of color) individuals with disabilities so they can come into the organization, as well as Black and Indigenous people of color who don’t have disabilities.
Q. How do CDR’s hiring practices help it operationalize the peer model?
A. We think the problems that we have are not because we’re disabled, but because society has not provided us with an even playing field of accessibility. As people who have navigated these things, we can share that information with each other and help each other navigate systems, and cope with the world in general that is sometimes hostile to us. Sometimes, people just know tricks of the trade.
Q. You have said that CDR’s board of directors, top executives and about 50% of its staff are disabled. Are you disabled?
A. I’m what’s called “face-blind.” I don’t recognize people. A woman hugged me at an event. Six months later, I realized who she was. I also have difficulties with time (and) spatial relations.
Q. CDR provides a number of direct services, including independent living skills training, a sign language interpreter program and vocational rehabilitation programs. Is there a program of which you are particularly proud?
A. Our consumer directed personal assistance services program is probably one of the most significant things we do. Unlike the traditional home care model, where the workers are identified, trained and then sent to your house to perform services, the disabled individual or their surrogate who is in the program takes on all of those functions. The disabled person or a surrogate or family member or someone connected to them, manages the support services that the individual receives in the home.
Q. How does CDPAS help the disabled people it serves do this?
A. We provide them with training, so that they know how to manage their services. They actually recruit, hire and train the workers, called personal assistants, who are in their home. These paid personal assistants provide assistance with activities of daily living and other tasks, such as help with medications, injections, feeding tubes and ventilators. We also walk you through how you can recruit the personal assistants.
Q. How are the personal assistants paid?
A. Typically, when you’re in this program you’re going to be connected to it through Medicaid or a managed care program that’s managing Medicaid dollars. If you’re not connected up with Medicaid or a managed care company that pays for this, we’ll work with you to do that. We process billing and payroll for these individuals, can provide support when there are performance issues that need to be addressed with personal assistants, and can help with recruiting.
Q. How has the pandemic affected your operations?
A. Because we provide frontline support, we’ve kept our offices open, although we did remote a lot of workers. We have also significantly limited anything face to face, and we have installed Plexiglas office dividers. We have also installed $130,000 worth of air purification and air exchange equipment to make the air safer.
Q. What is CDR’s greatest immediate challenge?
A. Probably our biggest challenge is ableism, the oppression faced by people with disabilities.
Q. How do you plan to attack that problem?
A. We do this by being who we are, unashamedly. By being upfront about being people with disabilities and working to support our community, we break down the ableist assumptions that people have about us.