CAIC Mortality research letterFor those who are not familiar with Assembly Bill 896, which proposes to
close California's institutions for people with developmental disabilities,
more information is available from this Inclusion Daily Express web page:
June 18, 2001
Assemblymember Carole Migden, Chair
Assembly Appropriations Committee
State Capitol
Sacramento CA 95814
Subject: AB 896
Mortality Research
Dear Assemblymember Migden,
I have recently reviewed a letter to you from Mr. Dan Western and Mr. Tom Meyers of the California Association of Psychiatric Technicians (CAPT). They oppose AB 896, and we support it. However, their assertion that community living is not safe for people with severe disabilities does not reflect current research. It is important, once and for all to put to rest these assertions that are perhaps useful in the field of public relations but are not based on the state of the science.
In their letter to you, CAPT relies heavily on mortality research by Dr. David Strauss, which appeared in the esteemed journal Mental Retardation of the American Association on Mental Retardation. The letter from CAPT apparently misrepresented the state of mortality research to such a degree that the Editor of Mental Retardation, Dr. Steven J. Taylor of Syracuse University, took the unusual step of writing to Mr. Western and Meyers to clarify the state of the research appearing in his journal. Mr. Western responded to Dr. Taylor challenging his interpretation and Dr. Taylor responded with additional detail. All this correspondence has been made public and is attached.
Dr. Taylor especially takes issue with CAPT for selectively quoting Dr. Strauss while ignoring the contrary opinions of every other author in the same issue of Mental Retardation. While Dr. Strauss is known as a credible researcher and capable statistician, other reputable researchers who published in the same issue of Mental Retardation have reached different conclusions. In his June 7 letter, Dr. Taylor states,
“The statements in your letter to Assembly Member Carol Migden are one-sided and misleading and do not reflect the scientific opinion regarding the California mortality studies published in the same issue of Mental Retardation in which you selectively quote Dr. Strauss and his colleague.”
In his June 10th e-mail response Dr. Taylor further states,
“The state of research on mortality in California is that there are conflicting studies reporting different findings and leading to different conclusions. It might be effective lobbying to only cite the studies that support one's own position or to summarily dismiss studies that do not (e.g., question the competence or motivations of the researchers), but it is poor science and inconsistent with accepted standards for the reporting of research.”
Summary
Dr. Taylor's letters enumerate many of the complexities and inconsistencies of mortality research. Policy makers such as yourself can not be burdened with the task of weighing the relative merits of various studies that reach differing conclusions. First of all, the research community, itself, has not been able to complete that analysis. Secondly, both sides of an issue can usually support their position through research, with people suggesting that the research that supports their position is valid and the research that doesn't is not. And finally, and most importantly, research does not determine human values. We didn't need research to give women the right to vote or to free the slaves. Similarly, we don't need research to tell us that people with disabilities have a right, just like us, to community living.
The California Alliance for Inclusive Communities (C.A.I.C.) is a statewide coalition of parent and consumer-driven advocacy organizations as well as individual parents, self-advocates, siblings, and providers. C.A.I.C. seeks to represent the interests of 170,000 Californian's with developmental disabilities and their families.
Thank you again for your vote in support of AB 896. If you have any questions concerning this material, please call me at 510-655-9016 or Dr. Steven Taylor at the Center on Human Policy, Syracuse University, 315-443-3851.
Sincerely,
Mark W. Polit,
Acting President
Enclosures: