COFAR Weblog

Since Judge Tauro lifted his suspension of transfers out of the Fernald Center (August 14, 2007) there have been eleven or twelve such transfers. The largest group is five or more individuals who were under the corporate guardianship of the ARC of Greater Boston (formerly GBARC). February 27, the Fernald League moved to halt such transfers again after a 91-year-old woman, described in court as A.T., was moved to a new state-operated group home in Bedford. Several witnesses appeared and were examined and cross examined, and a full account of the day will appear in the next COFAR newsletter. Although the judge denied the Fernald League motion, and transfers can procede, he did ask the US Attorney's office, acting as his monitor, to look further into the case of A.T. and report back.

In the day of testimony, quite a lot emerged about the overeagerness of DMR to transfer people out of Fernald, and the weakness of the corporate guardianship system. The family guardians of most remaining Fernald patients have supported their relatives who do not want to move. But corporate guardians are paid for only 20 hours per year (at $50 an hour). GBARC does this with rotating case managers. Thus the effective guardians, the case managers, do not often meet with their wards. In the case of A.T., who has been at Fernald for 50 years, the case manager who transfered her could not remember what medications she took, what medical conditions she has, or the names of staff members at either Fernald or the Bedford group home. Her previous case manager, who was taken off the case because she would not make a plan to move A.T. from her longtime home, had seen her perhaps three or four times in a year.

There was plenty of testimony, even from the case manager who moved her, that A.T. did not want to leave Fernald, and had been negative about it the day before she was moved. It also emerged in court that the GBARC case manager had urged DMR to discipline four Fernald staffers who reminded A.T. to tell her guardian/case manager that she didn't want to move. And that this guardian/case manager had refused to allow a Fernald therapist to call A.T.'s sister (and former conservator). This same case manager also banned all visits to A.T. in her new home for two weeks.

More detail may emerge in the monitor's report. My own feeling after a long day in the courtroom, is that corporate guardianship may work for residents of a total institution like Fernald, where the same staff care for people for long periods of time. But such guardians do have the time to work out something as complicated as a transfer, and will not be adaquate to the community residential system, in which staff turnover is high.

Every family member I've met in COFAR has several stories of saving their loved one from medical errors and neglect because they have become a de-facto case manager. DMR case managers, with caseloads of 50-plus and heavy data entry demands, are losing any ability to work with individual needs. Family members are more and more the only person who knows the original diagnosis, the medication history, and how to communicate fully with their loved ones. People like A.T., with only one living relative who is also quite old, and lives out-of-state, are at the mercy of the system if they don't have a truly dedicated guardian.

GBARC seems to have been a decent corporate guardian for residents of Fernald, in some cases going back to the early 1990s (longer than any insitutional memory at GBARC, apparently). For some reason, the agency seems to have decided only last year that it was time to ignore the individual histories of their wards and "move them all out" (as testified by the former case manager) per DMR's plan to close the Fernald Center and the ARC of Massachusetts' ideology that every single person with MR/DD and any complications is better off in a community setting no matter what they think or what their legal rights are.

--Mark Zanger

COFAR newsletter editor

(To add a comment, click the tiny blue "comments" to the right, or click "continue reading" at the bottom)
U.S. District Court Judge Joseph L. Tauro today reopened the Ricci v. Okin case and issued two orders. 
The first dissolved his February, 2006 injunction barring all transfers out of Fernald. The second part states,
 “Any further communication from Defendant Commonwealth of Massachusetts Department of Mental 
Retardation to Fernald residents and their guardians which solicits choices for further residential placement 
shall include Fernald among the options which residents and guardians may rank when expressing their 
preferences.”

The Judge's memorandum (read it from the link on the home page) makes a number of interesting points,
and we are interesting in your reactions and comments. Some initial comments from COFAR officers follow.
The forces who have been pressing to close all the facilities will be launching a campaign to the legislature
and the governor demanding an appeal of the decision. We urge COFAR members to call and write the
governor and the legislature to accept the Court's ruling, and to use this opportunity to negotiate the future
of DMR treatment facilities with the families involved.

COFAR President David Hart: “This is a clear decision endorsing family choice and a full continuum
of care. The judge has told Massachusetts – and probably warned every other state government – 
that the law does not tolerate the kind of intimidation families faced when Governor Romney announced
he was closing all the large facilities, and the Department of Mental Retardation warned families and
guardians that they better transfer their loved ones out of Fernald in a hurry because those who waited
wouldn’t get any choice at all.”

COFAR Executive Director Colleen M. Lutkevich:  “This is a real win - not just for the Fernald residents,
but for everyone who has a loved one in the care of DMR.  Now we can hope that DMR and the
[Patrick] Administration are ready to listen to families and to talk reasonably with us about the future
of DMR - both in the facilities and in the community.”

COFAR Vice President Thomas J. Frain: "If you look at the Judge’s memorandum, he is really
concerned with the integrity of the Individual Service Plan (ISP) process, by which people served
by DMR can define what they need and how it will be provided. These plans have to be based on
the individual needs of the person, not on what the state decides to make available. For most of the
people who still reside at Fernald, that facility is the best possible option for them. The Court Monitor
visited there often, and his report warned that transfers ‘could have devastating effects.’ When DMR
unilaterally announced that they were closing Fernald, and that option will no longer be available,
that violated the ISP rights of every Fernald resident.”

The memorandum states: “Administering this [ISP] process under the global declaration that Fernald
will be closed, however, eviscerates this opportunity for fully informed individualized oversight…. 
it also deprives the DMR itself of valuable information, thereby undermining the efficacy of the ISP
process.”

In an apparent nudge toward negotiations, a footnote to the Memorandum states, “The court would
however, encourage the DMR and the Commonwealth to consider alternative proposals for Fernald,
such as the one put forward by the Court Monitor at p. 25-26 of his report, which could use the
existing capacity and resources available at Fernald to efficiently meet the needs of individuals, as
well as the policy priorities of the Commonwealth, without causing the trauma and ‘devastating effects’
that could result from transfers.” The reference is to the “postage stamp” proposal to integrate
residential, respite, and community services in a small portion of the Fernald campus, freeing the
rest of the property for other uses. This proposal was developed by the families in the Fernald
League, and has also been considered by the community-based Fernald Working Group.
 
What do you think?