by Douglas J. Usiak, Chief Executive Officer
Since this will be probably the last newsletter for the 2019 year, I think that I will take the time to reflect on some of the occurrences around the Western New York Independent Living, Inc. Family of Agencies (WNYIL). The year started with a major shock: the passing of the long-time President of our Board of Directors, Dennis M. Kessel. A tri-lateral amputee since birth, he was active on the Board from 1982 until 2019 and served admirably as its President for 30 years. Under Dennis’ leadership, the agency grew from about a dozen staff providing services to consumers in Erie County, to the organization it is today. We have over 2,600 people picking up a paycheck, with offices in four counties, and are contracting programs and services to six other Independent Living Centers serving 22 Counties in New York State. I call that a job well done, Dennis!
In late Winter or early Spring, a bill was passed by the New York State Legislature, that was intended to redesign the Consumer Directed Personal Assistance Services Program (CDPAS) in New York. The method of payment for the administration of the service was to change from a long-standing hourly rate to a managed care per-member-per-month reimbursement. This "little adjustment" would cause a 65% reduction in WNYIL’s resources that are needed to provide and administer the service.
To our consumers' credit, this bizarre knee-jerk reaction to a very beneficial, rapidly growing program was not taken lying down. Press conferences were held by individuals who were participants of the program, to bring to light their concerns of a projected catastrophic impact on services that would result if the reduction were to happen in our community. Then, the Board of Directors of WNYIL agreed to join other organizations, by signing on to an Article 78 legal action, claiming that the process by which the New York State Department of Health (NYS DOH) executed the new payment option was not done properly. This effort by our Board was a joint action with: the Consumer Directed Personal Assistance Association of New York State (CDPAANYS); the New York Association on Independent Living (NYAIL); the New York State Association of Health Care Providers (NYSAHCP); Southern Tier Independence Center (STIC); AIM Independent Living Services; Rockland Independent Living Center, dba BRIDGES; the Center for Disability Rights (CDR); Independent Living Center of the Hudson Valley (ILCHV); Finger Lakes Independence Center (FLIC); ARISE Child and Family Service, Inc.; Independent Home Care, Inc.; Long Island Center for Independent Living, Inc (LICIL); and Consumer Directed Choices, Inc.
Our consumers and their personal assistants not only participated in community demonstrations and press conferences, but wrote letters, made phone calls, and made trips to Albany to demonstrate to the NYS Department of Health and even the Governor’s office, their belief that this was an eminently bad decision.Even on the day of the actual hearing in front of the Supreme Court of New York in Albany County, consumers from all around the Empire State came to hear and participate in the protest of this landmark action that people with consumer-directed in-home care were facing.
And would you believe it, we won! Unfortunately, this probably means (in the words of Todd Vaarwerk, our Chief of Public Policy), “We have just beat back an offensive." Meaning that NYS DOH, if we are to take them at their word, is still attempting to reduce costs. So, we will see another attempt at lowering this rate, hopefully not as deep or as disastrous as the last one would’ve been, if not for people with disabilities taking the bull by the horns."
WNYIL was to deal with its second loss of the year. Its founder and former Executive Director, Anthony (Tony) Serra passed away. Over 40 years ago, Tony had the privilege to go to the original Center for Independent Living (CIL) in Berkley, California, where he was introduced to the philosophy and mission of Independent Living. At that time, Tony was doing an internship for his graduate work in Rehabilitation Counseling, at the University at Buffalo, and embraced the spirit of equal access, self-direction, and peer support, of the people of the CIL. They were not only working with their brothers and sisters with disabilities but were pushing that City to become more accessible for all people with disabilities. Tony brought home this spirit to the City of Good Neighbors, and, along with the disabled student union at the University at Buffalo, “The Independents”, wrote and received a grant to begin our predecessor, the Western New York Independent Living Project. It provided the IL core services of Peer Counseling, Independent Living skills, Advocacy and Information & Referral.
Tony’s contributions did not stop there. He was the first Executive Director of the Erie County Office for People with Disabilities, the founder of the first Niagara Falls CIL, the Niagara Frontier Center for Independent Living, and later went to Albany to work in the New York State Office of the Advocate for Persons with Disabilities, and finished up as one of the regional directors of VESID (Vocational and Educational Services for Individuals with Disabilities), now known as ACCES-VR (Adult Career and Continuing Education Services – Vocational Rehabilitation).
At 70 years old, Tony, a quadriplegic since the age of 16, has made a huge impact on the lives of people with disabilities. That is not only in direct services, but with his tireless efforts as a community change agent, and with his work in pushing for, and advocating on behalf of, legislation that improved the programs and services for people with disabilities here in Western New York, throughout the State, and nationally. Our thanks and gratitude go out to Tony, and our blessings to his family and friends, for he will be missed.
As the year moves on, we have been able to replace the roof at our youngest member of the Family of Agencies, the Niagara Frontier Radio Reading Service. Their volunteers provide a voice for the printed word, 24 hours per day, for those of us who are unable to read it for ourselves. And, as I understand it, they will soon be able to stream their service via the Internet, once all the software and hardware upgrades are in place. I look forward to the time when anyone in Western New York and Southern Ontario who needs to, or wants to, access the printed word is empowered by doing so, especially when it comes to local news and publications.
In closing, I dedicate my last few years as WNYIL’s CEO to my niece Shannan Tabak, a young woman who came into this world as a person with multiple disabilities. With very severe intellectual challenges, blindness, and lacking individual ambulation, she spent her entire life dependent on others to assist her in being part of our family. Thanks to her parents' devotion to her, Shannan was able to participate in family gatherings, outside activities, school, and trips. Her ability to live at home, with the family who loved her, gave Shannan the daily feeling of belonging and being loved, as she struggled with 30 years of disabling conditions that would eventually take her from us all. I credit the work of Centers for Independent Living throughout this Country for creating the in-home supports and services that Shannan and her family utilized to keep her out of institutional care. Whereas, I know that institutional care would never have been an option for Shannan as long as her family was around, their strength and commitment to community participation for all will inspire me every day from this day forward. I now know that, as Shannan rests in peace, that the work that I and those at WNYIL have been doing for forty years will continue to make opportunities and choices available for many of our brothers and sisters, which they never would have had, just a few decades ago.