Leaders in intellectual and development disabilities (I/DD) are in the crosswinds of a crisis because of the lack of clarity and predictability about New York State’s timing and direction of managed care. The result of trying to plan for vulnerable persons served is obvious and unacceptable: The field is indeed dangling while awaiting a final definitive policy statement.
It is important to note that Ms. Kerri Neifeld has been nominated by Governor Kathy Hochul to be the new Commissioner of the New York State Office for People with Developmental Disabilities (OPWDD). This is a promising appointment and a time to be supportive. The state office will now have had five commissioners going on eleven years. Leadership continuity, as for most organizations, is an essential pillar for success.
Equally important is understanding the pathway to the current state of affairs. This is why I have written and published a new book, Dangling on a String: The Future of Public Policy for the Field of Intellectual and Developmental Disabilities in New York State.
The title is based on a phrase I have heard many times in my career about the need for management to be definitive about strategy and policy. Although there are several meanings and connotations, I am using the title to characterize the current uncertainty of public policy in the I/DD field.
The point of the collection of papers in the book – commentaries, policy memos, and journal articles (including those from Autism Spectrum News) – is to portray the vigorous intellectual and policy thinking over the last ten years in New York State in the area of I/DD.
As I write in the book, the human spirit is wondrous but complicated because it so often resists change in the desire for stability or homeostasis. On the other hand, there is the spirit of adventure and discovery. What a joy it is to behold when a person with intellectual and developmental disabilities discovers something new!
My intent as an author is to open the door for discovery by analyzing the past decade, building on the conclusions and experiences as a fresh starting point to reinvigorate the field.
Without an explicit vision, we would be at a loss about the key decisions to arrive at a sound future. Despite the fact that significant fixes are necessary in the current system, I see genuine possibilities for the years ahead.
I had the advantage of being a participant and firsthand witness to the strife in the field, owing to the opportunity to work with a collaborative of leading organizations. The members were dominant players because of the breadth and depth of the services provided in their agencies. They continue to build on a proud legacy (New York Integrated Network for Persons with Intellectual and Developmental Disabilities – NYIN).
The primary goal of my career has been to build the capacity to help people live as independently as possible. We need to push the system to its outer limits to create the circumstances for individuals to make their own decisions and take charge of their lives.
In Dangling on a String, I discuss the “Cuomo Effect.” Governor Andrew Cuomo has always stood for social justice. In view of this, it is baffling that he did not do more the entire time he was in office to help individuals with intellectual and developmental disabilities. His failure to advance the reform of the I/DD field is the one thread left out of the former Governor’s whole cloth of social justice (keep in mind that I prepared this book before he resigned in August 2021).
Frustration with the gubernatorial lack of attention has greatly influenced my opinions. The time and attention devoted to warding off the continued financial erosion of the field was – and is – enormous. So much political capital was expended during the battles of the past 10 years that the field was in jeopardy of losing its footings, much less advancing any vision.
The harsh judgment of Governor Andrew Cuomo’s lack of leadership in this area of public policy is not overstated. More than even benign neglect, the failure at the top was total neglect.
Some of the Governor’s actions could be construed as hostile, particularly his continued proposed cuts to the field. Another startling example was turning his back on how the COVID crisis early on was dramatically and dangerously affecting everyone in the entire field, first and foremost those who depend on government, medical, and societal support.
Passion and determination were key elements in the success of the modern social revolution starting with the Willowbrook Consent Decree in 1975. Of course, the parents who started the movement in the late 1940s are the ones we need to honor. However, we can put those qualities to work, mixing them with creativity, reason, and good science to get us down the road.
As an optimist for over 50 years of professional life, I have seen the best of what humanity can achieve as well as what happens when we lose our way, in some cases in painful ways.
As we move forward, I do believe that we can and should be optimistic. With a little bit of mind-bending and then throwing in a little luck, we can create a wonderful future for men, women, and youth with intellectual and developmental disabilities. They have a right to choose self-direction to fulfill their long-held dream of a life of freedom.
My book aims to help stakeholders frame the answers to critical policy questions. You will see an ad in this issue of Autism Spectrum News to access/order the new book: Dangling on a String: The Future of Public Policy for the Field of Intellectual and Developmental Disabilities in New York State, by Arthur Y. Webb.
Arthur Y. Webb was the former commissioner of OMRDD (now OPWDD) from 1983 to 1990 and Executive Director of Division of Substance Abuse Services (now OASAS) from 1990 to 1992. Mr. Webb has held several senior executive positions in government and the nonprofit sectors. For the last ten years, he has been a consultant working with numerous nonprofits to translate public policy into innovative solutions. From 2011 to 2021, he was the Executive Director of the New York Integrated Network for Persons with Intellectual and Developmental Disabilities (a nonprofit collaboration of 12 providers). Presently he is the Executive Director of Alliance for Integrated Care New York (AICNY), a Medicare Accountable Care Organization for persons with I/DD. Contact: email@example.com or 917-716-8180