Rochester ADAPT activists from the Center for Disability Rights took our message to Governor Cuomo’s Medicaid Redesign Team at a hearing held in Rochester on January 20. About 40 of the activists wore bright orange t-shirts with the messages of “Community Choice” and “Don’t Cap Personal Care.”

Supported by this sea of orange t-shirts, the color that symbolizes the national campaign to reverse the institutional bias in Medicaid, ten of the activists each delivered two minutes of testimony. The Medicaid Redesign Team is asking for ideas about how to save Medicaid costs while improving quality. We’ve said it before for years, but maybe they’ll listen at last – Medicaid can save money by supporting people to live in the community rather than facilities, and by expanding the use of consumer directed services.

Bruce Darling talked about the Community First Choice Option (CFC) which ADAPT conceived of, fought for and won in health care reform. If New York adopts CFC, it can draw down increased federal matching funds for community services and save the state nearly $400 million over 5 years. The public officials present seemed to perk up about those dollar signs, an incentive to states to get out of their institutional rut.

Michelle Fridley and Debbie Bonomo talked about managing their own services in the consumer directed program. Since they do their own scheduling, training and supervision, Medicaid doesn’t have to pay a nurse or case manager to do it. The Medicaid note taker typed on the screen, “Expand consumer directed services.” They got the point. Michelle and Debbie did so well that a Channel 8 reporter and camera followed up with them immediately.

Chris Hilderbrant spoke powerfully about the excessive red tape that has prevented the Medicaid waivers from helping people move out and stay out of nursing facilities. He gave a persuasive example of red tape – people who are already in a nursing facility on Medicaid have to start over to prove they are eligible for Medicaid before they can get into the waiver.

I talked about the ways that adaptive devices, such as lifts and remote controls and door openers, can reduce the personal care hours that a person needs for everyday tasks.

Each of these topics is discussed in detail in the Disability Advocates’ Budget Proposals (PDF Large Print/Text Format) already submitted to Governor Cuomo by CDR and the New York Association on Independent Living.

We also thank the other Rochester ADAPT/CDR activists who testified passionately to emphasize our civil rights in Medicaid, including Carmen Hernandez, Shelly Perrin, Kevin Figler, Dean DeRusso and Kathy Benner.

Immediately following the formal hearing, Rochester ADAPT requested and held a face-to-face meeting with the new Medicaid Director, Jason Helgerson. We discussed four topics that couldn’t be covered adequately in the tightly limited two-minute testimonies:

• The big bucks that the CFC Option can save (worthy of repetition!), and the importance of implementing it correctly (in contrast to the red tape problems we see too often);
• The problem of differences between the counties in personal care hours authorized;
• The problem of Monroe County consumer directed service agencies overruling consumer choice of attendants; and
• The problem of unequal treatment of spousal income issues between people in nursing facilities and home care, making it harder for people who want home care.

Thanks to everyone who braved the severe cold to deliver a strong message at this critical time in the development of the NYS budget. Thanks to Medicaid Matters Coordinator Lara Kassel, who serves as the only Medicaid consumers advocate on the Redesign Team, for travelling from Albany to attend the hearing.

Stay tuned for updates as the budget process moves forward. If you’d like to be added to CDR’s Action Alert email list, please email Diane Coleman at dcoleman@cdrnys.org.