COFAR blog

Late last month, we received a report that a healthy, 55-year-old man had been transferred from his home at the Templeton Developmental Center and subsequently died four days later at a community-based group home.

The death reportedly occurred around July 24.

As an organization that advocates on behalf of persons with intellectual disabilities and their families and guardians, COFAR has an interest in getting to the bottom of reports such as this.

Is the report, in fact, true?  If so, why would a healthy man die four days after being transferred from one Department of Developmental Services location to another?  The answers to these questions could help us better understand the state of care available to all DDS clients.

We posed those questions regarding this reported death in an email on July 27 to DDS Commissioner Elin Howe.  In response, we received a message on July 29 from DDS General Counsel Marianne Meacham, which provided no answers and stated that personal and medical information is exempt from disclosure under the state’s Public Records Law.  Meacham also cited a provision in DDS’s enabling statute, stating that records of admission and treatment to DDS facilities shall be kept private.

For reasons I’ll get into below, we intend to appeal this denial of information to the state’s Public Records Division.  But first, I’d note that DDS’s reaction to our query appears unfortunately to be part of a longstanding pattern on the part of the department of secrecy concerning deaths of persons in its care.

For years, our member organization, the Advocacy Network, has tried without success to obtain notification from DDS of the deaths of former residents of the Belchertown State School and other facilities in order to arrange to pay proper respects to those people.  In one case, the Network learned that the cremated ashes of a resident of a vendor-based group home in the Pioneer Valley had sat disregarded on a shelf in the provider’s business office for two years.   

In their Spring 2009 newsletter, the Advocacy Network stated that DDS cited confidentiality and privacy regulations as reasons for not providing notifications of the deaths of DDS residents even when obituaries had been published in newspapers.

Edward Orzechowski, editor of The Advocacy Network News, quotes Donald Vitkus, a former resident of the Belchertown State School as saying, “‘No one ever died at Belchertown. People just were never seen or talked about again.'”  Although that apparently was the case at this former state facility in the 1950s, one wonders if that situation still prevails in the DDS system.

To be fair, deaths at the Wrentham Developmental Center appears to be handled much differently.  COFAR Executive Director Colleen Lutkevich notes that when Wrentham residents die, residents’ guardians are notified and wakes and funerals are held, which are attended by residents, staff, families and friends. 

In refusing to provide any informaton about the reported death of the former Templeton Development Center resident, Meacham appears to have cited an exemption to the Public Records Law [M.G.L. Chapter 4 Section 7(26)] that concerns “medical files or information…(and)  any other materials or data relating to a specifically named individual, the disclosure of which may constitute an unwarranted invasion of personal privacy.”  She also cited DDS’s enabling statute ( M.G.L. Chapter 123B, Section 17), which states that records of admission and treatment to DDS facilities shall be kept private.

We intend to appeal this denial of information because we were not asking for medical files or medical information or for records of admission or treatment.  Instead, we are seeking information about the circumstances under which a client in the DDS system died.  Secondly, case law, as we understand it, holds that personal privacy rights end when a person dies.

Not only do we and our member families have an interest in learning about deaths of persons in DDS care, the general public has a legitmate interest in knowing about this as well.   What if there was negligence or even foul play involved?  DDS has to start using common sense and stop hiding behind false confidentiality and privacy claims in these cases.