The Center for Disability Rights (CDR) has been approved as a lead Fiscal Intermediary for the Consumer Directed Personal Assistance Program in 52 counties across New York State. CDR, a disability-led organization, is uniquely qualified to operate this program. Thirty-one years ago, as volunteers, the organization started writing a policy report, titled Early to Bed/Late to Rise. That report was published in 1993 and called on the state to expand the Consumer Directed Personal Assistance Program statewide. The work of CDR volunteers served as the centerpiece of the campaign that successfully achieved that goal in a single legislative session culminating in Governor Pataki signing the legislation into law.
Initially, CDR did not intend to implement the program model it advanced and instead focused on its role as an advocacy organization, but when rollout in Monroe County wasn’t effective the organization decided it needed to step in. “If Disabled people want something done right, we need to do it ourselves,” said Bruce Darling, CDR’s President and CEO. As it did in writing the report which established the statewide program, CDR centered the voices of attendant service users and their attendants. “This program is really a testament to Carmen Hernandez. Carmen had Muscular Dystrophy and needed round-the-clock assistance while she raised her own child, which was unheard of at the time,” said Darling. “She was a true partner in this work. As someone who used attendant services much of her life, she knew exactly what she wanted, described it, and then charged me to build it.”
The Center for Disability Rights is known throughout the state and country for its innovative services and effective advocacy. In addition to its consumer directed personal assistance services, the organization developed a model for nursing facility transition and has trained people from every corner of the country in that work. The organization also offers Pooled Trust services throughout the state, and served about 10,000 New Yorkers with disabilities last year.
CDR began serving as a fiscal intermediary in 1999 and served as a fiscal intermediary in Monroe County for more than a decade. Under its auspices, the program grew dramatically due to CDR’s focus on supporting disabled individuals in managing their own services.
The organization acknowledges the work of the volunteers who in the early 1990s and crafted the policy paper that kick-started this process. Debra Bonomo, chair of CDR’s Board of Directors said, “Many of these people – including my husband, Joe – are no longer with us, but the impact these people had is now undeniable. A small group of committed people can really change the world.”
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