Future of NYS’ research into developmental disabilities approaching pivotal moment
By SHERRY HALBROOK
The state Institute for Basic Research in Developmental Disabilities (IBRDD) on Staten Island is one of New York’s best kept secrets, but it shouldn’t be.
Nearly 100 PEF members are among the IBRDD employees conducting research into the origins and causes of developmental disabilities such as autism, as well as creating strategies and methods to address those disabilities. It also provides services through the facility’s George A. Jervis Clinic, Specialty Clinical Laboratories and Early Intervention Evaluation program to individuals with developmental disabilities. The institute also provides extensive public education.
Among the cutting-edge research efforts at the institute’s seven research departments and 36 laboratories are investigations into autism, Down syndrome, Alzheimer’s disease, fragile X syndrome, inborn metabolic errors, the prevention of pre-term births and many others that probe the mysteries of the brain, genetics, neuroscience, and cognitive development. Their discoveries help save lives and improve the quality of life for people with developmental disabilities.
Relatively few institutions in the world are devoted to pure research on these subjects, which means the IBRDD plays a somewhat unique and vitally important role for many thousands of individuals and families. It also helps the state plan for future service needs.
A year ago, in his 2017 State of the State address, Gov. Andrew Cuomo announced the state Office for People with Developmental Disabilities (OPWDD), of which IBRDD is a part, would discuss the facility’s future with the College of Staten Island (CSI) that is part of the City University of New York, and a possible merger of the institute with the college. Both the institute and the college are located on the grounds of the former Willowbrook State School.
The possibility of such a merger raises many questions for the PEF members at the institute, who are concerned about their future status as state employees, their representation by PEF, their state civil service positions and seniority, their compensation and employment benefits and their pensions among others. They are also anxious to protect their research and the clinical services they provide.
A “Blue Ribbon Panel” of 23 members was appointed last year to study the situation and make recommendations. That panel met for the first time November 3, and divided into subcommittees to do further investigation. They are scheduled to meet until at least early February.
The panel is co-chaired by OPWDD Acting Commissioner Kerry Delaney and CSI President Dr. William Fritz. Among the panel members are state Sen. Andrew Lanza and state Assemblyman Michael Cusick who represent the districts in which the institute is located. Joseph Maturi, the acting director of the IBRDD is also a panel member.
PEF Division 345 Council Leader Anne Gordon, a research scientist 3 at the IBRDD is among the panelists, as well as PEF members Dr. Jeffrey Goodman, a research scientist 5 at IBRDD; and Dr. Milen Velinov, director of the Jervis Clinic. In addition, PEF President Wayne Spence is represented on the panel by member Charles Roland, a psychiatric social worker at the nearby South Beach Psychiatric Center. Another panelist, Dr. Edward Nunes from the NYS Psychiatric Institute and a professor of psychiatry at Columbia University, is also represented by PEF. In addition, PEF field representative Priscilla Marco is closely following the panel and its efforts.
The panel is attempting to identify ways the institute and college can work together to build on the existing world-class research and “capitalize” on that research, while supporting the goals of both institutions. The panel is looking for ways to achieve efficiencies through shared services.
Both legislators on the panel have stated they want to keep the institute’s research and clinic on Staten Island. They have noted that funding to update the institute’s physical plant is needed, including significant asbestos abatement, and the 2018-19 state budget process is now beginning, with the governor’s funding proposals due in late January and the current budget ending March 31.
The governor’s Executive Budget for 2018-19 proposes to continue funding and staffing for IBRDD at the 2017-18 levels while the panel continues examining the feasibility of transitioning some or all operational components of the institute from OPWDD to the CSI.
Historically, OPWDD has focused its budgetary resources more on direct services than on research with the result that maintaining the institute’s buildings and equipment, and replacing researchers as they retire have not been high priorities. Now the median age of the institute’s researchers is 65, and the need to hire and develop more young research staff is increasingly worrisome.
“At one time, we had 250 members here,” Gordon said. “Now it’s down to 97. The state tried to close the institute twice before, in 1995 and in 2003. It has really taken a toll.”
“We are a failing institute in terms of viability and vibrancy,” said PEF member Sharon Krinsky-McHale, a research scientist 5 who is investigating possible links between Down syndrome and Alzheimer’s disease. “We need to hire more young scientists and keep up with the technology so we can stay in the forefront of research. The basic research we do here is extraordinarily important.”
“Our members want to remain state employees and they definitely want to remain in PEF. And we want to maintain control over our research. It is so important. We have helped people from all over the state, and what we learn here helps advance understanding globally,” Gordon said.
“It’s not just about our current PEF members; it’s about our future members, too,” said PEF Director of Field Services and Organizing Downstate Nisha Bannerjee.