I first became involved in advocacy for consumer directed services in 1982 in Los Angeles. Like many people with significant disabilities, I wanted to limit medical control and intrusion into my personal life. Nurses and social workers can really mess up your love life, and other freedoms most people take for granted.

By the 1990s, many policy makers began to see consumer controlled services as a best practice to be emulated. As the executive director of an Independent Living Center in Cook County, Illinois, I ran one of a dozen research and demonstration projects about consumer direction, funded by the Robert Wood Johnson Foundation in the late 1990s. Support for the concept grew. More and more states adopted the model as an option for people with disabilities and seniors who could manage their own home care.One of those states is New York, and I was glad to move here in 2008 and work on the advocacy team at CDR. CDR has a national reputation as a leader in the disability rights movement and as an advocate for positive reform in long term care policy.

As an experienced non-profit manager and policy advocate, still working full time, I don’t qualify for Medicaid, but I do need some home services. I pay for them out of pocket.

For years I’ve had to manage the paperwork for payroll taxes and other obligations associated with having a home services worker. Now I have the choice to pay CDR to serve as my fiscal agent for payroll purposes. Like Medicaid consumers of the Consumer Directed Personal Assistant Services (CDPAS) program, I used the CDR system to help me recruit my attendant. I turn in a timesheet every week that includes the best fraud control mechanisms I’ve ever seen to prevent false billing. Unlike Medicaid CDPAS consumers, CDR bills me for my attendant services rather than Medicaid. So for now, the County can’t take away my choice.

My point is that I don’t have to use CDR’s services – I choose to use CDR’s services. I choose CDR because they offer the best in consumer controlled home care. I get to control my own services by selecting, training and scheduling my own aide. I have high confidence that the high quality of support I’m counting on will continue because CDR is run by people with disabilities. The majority of board and staff are people with disabilities. Just as women’s organizations should be run by women, and other minority organizations should be run by their membership, disability organizations should be run by us. CDR is us.

So please do whatever you can to support CDR to keep its contact to serve as fiscal agent for CDPAS. Call Maggie Brooks at 585-753-1000. Comment online in response to press coverage of this issue. Get updates on the CDR website at www.cdrnys.org. We need your help to defend our freedom.