On Wednesday, October 8th, twenty one disability rights advocates headed from Rochester to Albany for the Most Integrated Setting Coordinating Council (MISCC) meeting. MISCC was established to develop a statewide plan to ensure that people with all disabilities and of all ages receive long term care services in the most integrated setting, rather than being forced into facilities.

We met in RCIL/CDR’s parking lot at 7:00 a.m. Our group was so excited to get there, that being pulled over by the police and receiving not one but two tickets could not stop us. We pulled into the Empire State Plaza by 11:30 a.m. After lunch and a pre-meeting, we filed into the meeting room, which was set up to accommodate over one hundred visitors as well as web-casting the entire proceeding.

MISCC is currently chaired by Commissioner Diana Jones Ritter of the Office of Mental Retardation and Developmental Disabilities (OMRDD). The Council consists of representatives from ten State agencies and nine appointed public representatives. MISCC has several state agency workgroups, plus three committees: housing, employment, and transportation. Meetings are held quarterly.

NYS Agency Council members are: Office of Mental Health, Department of Health, State Office for the Aging, Office of Mental Retardation and Developmental Disabilities, Education Department, Office of Alcoholism and Substance Abuse Services, Division of Housing and Community Renewal, Department of Transportation, Office of Children and Family Services, and the Commission on Quality of Care and Advocacy for Persons with Disabilities.

The nine appointed members consist of: three consumers of services for individuals with disabilities, three individuals with expertise in the field of community services for people of all ages with disabilities, and three individuals with expertise in or recipients of services available to senior citizens with disabilities.

The meeting started off with welcomes and a review of MISCC actions from Commissioner Ritter. The State Agency Stakeholder group gave updates, and each of the three committees gave their reports as well. A copy of the overall MISCC draft report was provided to all visitors. A final report is due in December.

During the constituent discussion that followed the reports, nine of us gave testimony. I may be a little biased, but I thought we all did a heck of a job. Bruce Darling spoke about the annual report and gave compliments to the agencies, while urging more specifics, especially from the Dept. of Health.

Gene Spinning spoke about problems in Medicaid Buy-In and urged independent living center (ILC) representation in county long term care councils. Diane Coleman compared her former state of Illinois and New York in terms of the expertise and involvement of ILCs in nursing home transition and the use of consumer directed services. Sue Stahl spoke about consumer perspectives and the urgency of real solutions for people stuck in facilities.

Leah Farrell spoke about the first of CDR’s position papers on the reform of long term care services, emphasizing that “most integrated setting” is a civil right. Dean DeRusso spoke about the importance of employment of people with disabilities, including people who are deaf. Frank Kimmes spoke about the need for sign language so that deaf seniors are not isolated without communication.

I spoke about my own experience of the contrasts between consumer directed and traditional home care. John Simaitis spoke about assessment and housing.

Finally, Rasheem Broughton surprised us all with his amazing gift for public speaking. He movingly described the struggle to find housing, and led the crowd in a chant demanding “ACCESSIBLE, AFFORDABLE, INTEGRATED HOUSING”!

After the meeting, we gathered at our favorite McDonald’s spot to debrief and catch a bite to eat. We eventually all packed up in our vehicles and attempted to head home. To make a long story short, after stopping to fix a broken tail pipe, we made it home safe and sound.

If you want to attend the any future MISCC meetings, please let me know at tlincoln@rcil.org. The next meeting is January 5th, 2009