[Note: Cross-posted from Blue Mass Group. This is my last post on behalf of my client, The Fernald League, Inc., which will be disbanding at the end of this year.]
It’s been more than three years since I began posting on Blue Mass Group as part of a campaign by families and guardians of residents of The Fernald Developmental Center to save their longtime home in Waltham, Massachusetts. After close to 90 posts, this will be the last on behalf of this family and guardian-run organization.
That doesn’t mean the campaign to save the Fernald Center is over or that I won’t write about this subject on behalf of another organization in the future. But the Fernald League has decided the time has come to end its role in the campaign to save the Center and will officially disband at the end of the year.
The Fernald League is a family-supported nonprofit organization that has been in existence since 1956. The League has always been initimately tied to the Fernald Center, the nation’s oldest state-operated facility for persons with intellectual disabilities. It was among the original plaintiffs in class-action lawsuits that were brought in the 1970s to improve conditions at Fernald and other state facilities for people with mental retardation. (More about that later.)
As any regular reader of these posts knows, two sucessive administrations have dedicated themselves to closing Fernald and at least three of the five other remaining state-run developmental centers in Massachusetts. Fernald was supposed to have been declared dead as of last June 30, and is only clinging to existence due to administrative appeals filed by about 20 gritty remaining guardians of the transfers of their wards.
In addition to the Fernald Center, the Patrick administration has targeted the Monson Developmental Center in Palmer, the Glavin Regional Center in Shrewsbury, and the Templeton Developmental Center in Baldwinville for closure by Fiscal Year 2013. The administration has indicated that no final decision has been made regarding the future of the two remaining developmental centers — the Hogan Regional Center in Danvers and the Wrentham Developmental Center.
Those Fernald Center guardians, who have chosen to continue their fight, strongly believe that they have a chance of outlasting the Commonwealth’s facility-closure effort. They’ve formed a group called Fernald Forever Families and have gotten funding for their legal costs from the Massachusetts Coalition of Families and Advocates (COFAR) and other organizations. We wish them the best of luck in their fight and are happy to pass the torch to them.
In this last post, I’d like to make a few points about our fight to save Fernald and about our blogging effort on BMG.
First, we’ve always considered the battle to save Fernald to be about more than Fernald alone. Fernald’s families and guardians have long viewed the Center as a safe and caring home for their vulnerable siblings and children and consider its pending closure a betrayal of a basic obligation of the Commonwealth.
We disagree with the assumption held by many in the media, in particular, that the closing of Fernald is strictly a local issue. That claim is wrong based simply on the fact that Fernald is the first of four remaining developmental centers around the state that the administration has marked for closure. On that basis alone, this should be seen as a statewide issue.
More importantly, Fernald and the other developmental centers should be seen as examples of a level of federally prescribed care that is fast disappearing in an age of privatized public services. In seeking to close these centers for the intellectually disabled, the Patrick administration is pushing us well down the road of privatization in this state.
Whether you agree that ending the model of developmental center care and privatizing human services is good or not, you have to agree that Fernald’s closure is part of a larger issue. It’s an issue that has to do with the type and level of care that the government has an obligation to provide to its most vulnerable citizens.
Dealing with myths
As part of our effort to demonstrate the larger context of the fight over Fernald, we have tried to hold two myths about Fernald and the other developmental centers up to the light of public scrutiny. The first is the myth that this type of care is outdated and that the developmental centers are “antiquated” and “segregated.” The second is the myth that closing the developmental centers will save taxpayers large amounts of money.
I’d venture to say the vast majority of our posts have been aimed at exposing these myths for what they are. I’m not sure we’ve been successful. The juggernaut of interests that have propagated these two myths has been so relentless that most people automatically assume them to be true.
The myth that the developmental centers are “antiquated” and “segregated”
There is no question but that the campuses of many of the developmental centers are large and that many of the buildings on those campuses are old. In some cases, previous administrations have chosen to abandon some unusable buildings on the Fernald campus rather than demolish them. But that has little if anything to do with the care and conditions inside the renovated buildings that are in use. And it has nothing to do with the ability of the developmental center staffs to integrate the residents into the life of the communities around them.
The campus of Harvard University is old too, but no one is saying that that institution is therefore antiquated or segregated. Similarly, does anyone contend that all condominium complexes, retirement communities, assisted living facilities, and nursing homes are antiquated and segregated?
Here, once again, is what the American Health Care Association has to say about today’s developmental centers for the intellectually disabled, throughout the country:
Changes and improvements in (developmental center) support and training services have created one of the most progressive and technically advanced programs anywhere in the world. For residents, quality of life has improved dramatically, as access and choice have become hallmarks of the (developmental center) program. Support and training programs now provide them with increased opportunities to live in more home-like, less restrictive settings and, to the extent possible, to become a more integral part of their communities.
As we’ve pointed out over and over again, care and conditions were vastly improved in the developmental centers in Massachusetts, starting in the late 1970s, as a result of a landmark class action lawsuit. Much of the credit for the improvements has to be given to the families of the residents of the then Fernald, Belchertown, Wrentham, Dever, Monson, and Templeton State Schools, who filed the initial class action suits, which were then combined into one overall case.
And much credit has to go to U.S. District Court Judge Joseph Tauro, who oversaw the overall Ricci V. Okin case. Judge Tauro personally visited all of the state schools and issued dozens of orders for improvements in care and conditions in them. When he formally disengaged from the case in 1993, Tauro filed a statement that descrbed a process since the 1970s that:
…has taken people with mental retardation from the snake pit, human warehouse environment of two decades ago to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.
Only in recent years have the Romney and Patrick administrations let those conditions deteriorate at Fernald as they cut the facility’s budget and laid off staff.
Today, the six developmental centers remaining in Massachusetts are the only publicly financed providers in the state of federally prescribed Intermediate Care Facility-level services. ICF-level care is specified in Title XIX of the Social Security Act, which authorizes Medicaid funding to the states. ICF-level care specifies, among other things, that doctors and nurses must be on site 24 hours per day. In contrast, community-based group homes in Massachusetts operate under a waiver of the ICF requirements. Among other differences, there is no on-site requirement for doctors and nurses in the community system.
Yet the high level of ICF care and the history of the improvements made in the developmental centers is never cited by those who are seeking to close them. In their report issued in August, which called for the closure of all six remaining developmental centers in Massachusetts, the Massachusetts Taxpayers and Boston Foundations simply referred to the centers as “antiquated” and “isolated.” How and in what way these characteristics are supposedly true are virtually never explained.
Here, in fact, is the only explanation in the MTF/BF report we could find regarding the “isolation” charge:
…many institutions are located on multi-building campuses in rural areas, making them hard to reach without a car, and isolating those being served from their families and communities, and making it difficult for families to visit or participate in treatment or planning for aftercare.
First of all, the Fernald, Hogan, and Glavin centers are located in urban or suburban areas, not rural, areas. And the fact that the Monson, Templeton, and Wrentham centers are located in what might be considered rural areas is largely due to the fact that they are located in parts of the state that are largely rural.
And “hard to reach without a car?” Do the authors of the MTF/BF report believe that the families of developmental center residents will no longer need to drive their cars to visit the community-based group homes around the state in which the MTF and BF want all persons with intellectual disabilities to be placed? The developmental center families know that the closures of the developmental centers will almost invariably mean longer drives to visit their loved ones once they are dispersed around the state in group homes.
Then there’s the Massachusetts Arc, whose members include human service vendors who will get more contracts with the state when residents are transferred from developmental centers to the group homes they run. The Arc loves to throw out the term, “segregated,” to describe Fernald and the other developmental centers.
The loaded charge of segregation is a particularly galling one to families and advocates of the developmental centers. They know that these centers are closely integrated with their surrounding communities. At Fernald, the Greene pool and gymnasium have been used extensively by community clients of the Department of Developmental Services. The Tufts dental clinic, which The Fernald League played a role in saving from closure this year on the Fernald campus, also primarily serves community-based clients.
That integration has worked in the other direction as well. Developmental center residents routinely go to movies, restaurants, and community events, and even on vacations with staff. As one Fernald League member describes it, Fernald operates much like a condominium complex or retirement community in that respect.
The myth of fiscal savings in closing the developmental centers
Perhaps in no other area did we spend more time and effort than in scruitinizing and ultimately rebutting the administration’s claims that closing the developmental centers will save millions of dollars in taxpayer money.
From our very first BMG post on August 16, 2007, we criticized the mainstream media’s unquestioning acceptance of the savings claims. Unfortunately, our admonitions appeared to have little effect. The administration has only had to make the pronouncement that the cost of developmental care is “X” and the cost of community-based care is “Y,” and the media have dutifully repeated that claim. We’ve never seen any independent scrutiny by any media organization of the administration’s numbers or analysis.
Similarly, in their August report, the MTF and BF relied entirely on the administration’s cost analysis in their recommendation that all six remaining developmental centers be closed. The two organizations did no independent analysis of the cost issue whatsoever.
In October 2007, we examined budget documents for Fernald, and later we examined records of the community-expansion and-facility-closure-based costs not counted by the administration in its savings claims. Those included costs such as the $3.2 million we found that the state was spending earlier this year on renovating the Wrentham Developmental Center to accomodate some 60 Fernald residents. We also examined lease arrangements for new community-based group homes built for Fernald residents that ran as high as $2 million or more per home over a 20-year period.
Based on our review of the Fernald documents in 2007, it was clear that the administration had simply divided the total Fernald budget by its population of residents in arriving at a cost-per-resident of $239,000 for Fiscal Year 2008. We believe this method overstated the cost per resident because it didn’t take into account the fact that a portion of Fernald’s budget paid for programs or services that benefitted community-based residents.
In addition, the documents we initially received from the Department of Developmental Services provided no indication of how the administration had come up with a claimed cost of $102,000 per resident for care in the community system. DDS later provided us with a different set of documents that purported to show how that number was derived. More importantly, the DDS Commissioner Elin Howe acknowledged in a letter to us in November 2007 that the $102,000 cost was based on the average cost of residential care in the community system.
In other words, in stating that community-based care was cheaper per resident than developmental-center care, the administration was comparing the average cost in the community to a calculated cost of care at Fernald. This was an apples-to-oranges comparison because Fernald has always served a population with a much more profound level of mental retardation and more severe medical needs on average than the population in the community system.
As Kevin Walsh, the lead author of an analysis of cost studies in the journal Mental Retardation, stated in 2009, costs don’t disappear when people are moved out of the developmental centers. They show up elsewhere, in Medicaid and in budgets of other agencies such as the Department of Housing and Urban Development and the Department of Agriculture.
We have also pointed out that the Patrick administration’s projected increases in funding to community-based care have not occurred as the Fernald Center has been phased down toward closure. In fact, the administration has continued to cut community-based line items in the state budget. Even the Arc and its related organization, the Association of Developmental Disabilities Providers, have contended that the administration’s facilities closures must be accompanied by adequate funding of the community system. That hasn’t happened, they acknowledge.
The lack of a plan
The larger issue behind the administration’s apparent inconsistency in closing developmental centers without increasing community-based program funding lies in its apparent lack of a plan for the future of the entire system of care for the intellectually disabled in Massachusetts.
Rather than taking time and effort to develop a comprehensive strategy for care into the future, the administration has latched on to one tactic — dismantling the developmental centers.
We have frequently pointed out problems endemic to the community system, including high levels of turnover and low pay and benefits in comparison with the developmental center-system. At the same time, thousands of people have been waiting for care in the community system, partly because the developmental centers have largely been closed to new admissions since the 1980s.
In fact, as DDS has built or developed community-based group homes, it has given preference to former developmental-center residents for those placements, passing over people waiting in the community. And those people in the community with lower levels of functioning have been systematically discouraged by DDS from even applying to live in the developmental centers.
As we have noted, the DDS’s 2009 Community Services Expansion and Facilities Restructuring plan is a “community services expansion” plan in name only. This plan projects the development through Fiscal Year 2013 of only enough new beds in the DDS system to accomodate residents of the developmental centers slated for closure. There’s nothing in the plan to accomodate the thousands of other people waiting for services.
The silence of the opponents
We’ve made our points repeatedly about the administration’s lack of planning and the importance of developmental-center care. In response, there has largely been silence from those advocating the closures of the developmental centers. DDS Commissioner Howe has responded to our letters to her, but neither she nor anyone else in the administration has ever directly responded to our public posts, even though the governor and members of his administration and advisors certainly read BMG and have often posted here themselves.
The Arc has almost never directly responded to us either, although one or two of its members have occasionally criticized our posts (usually without responding to the specific points made in those posts).
Clearly, the opponents of the developmental centers have made it a deliberate strategy to ignore our arguments. There are good reasons for that strategy. Why get into a discussion about substance when it works to toss out terms like “segregated” and “antiquated?”
We speculated in our second-to-last post here that one reason for the administration’s silence has had to do with its unwillingness to draw attention to the developmental center closures during the governor’s re-election campaign. As Thomas Frain, an attorney representing four of the Fernald guardians who are appealing the tranfers of their wards, pointed out, “There’s nothing to be proud of in evicting retarded people from their homes.”
That, of course, hasn’t stopped the administration from proceeding full-speed with the Fernald closure behind the scenes. As we noted, the administration has employed no fewer than seven DDS attorneys to fight the ongoing administrative appeals by the Fernald guardians.
Howe also worked behind the scenes during the past two years to stifle attempts in the Legislature to require a cost analysis by the administration before it could move to close the Fernald Center. As a result, Fernald was exempted from a cost-analysis requirement that applies to the three other developmental centers slated for closure. This, despite the personal promise that Governor Patrick made to a Fernald family member that such an analysis would be done.
The Postage Stamp proposal
That silence among the developmental center opponents has extended to the longstanding proposal by The Fernald League and other developmental-center advocates to scale back the footprint of the Fernald Center. Even The Boston Globe, which rarely covers the Fernald closure issue anymore, suggested some time back that the postage stamp would be a natural basis for a compromise. In September 2007, The Globe wrote an editorial endorsing the postage-stamp approach and stating that:
Instead of wasting money and good will on litigation, administration officials should meet with families of Fernald residents to discuss ways of keeping their loved ones in the place they have been in for decades – while making other parts of the campus available for other purposes.
Of course, what actually happened is that the administration chose to waste money and good will on litigation and never did meet with the families to discuss any sort of compromise. The Globe wrote this editorial just after the administration appealed a ruling in August 2007 by U.S. District Court Judge Joseph Tauro that Fernald should remain as a residential option for its current residents.
DDS Commissioner Howe dismissed the postage-stamp proposal in her November 2007 letter to us, saying it would require renovations to 60 percent of the Fernald campus. Unfortunately, no one at DDS ever talked to former Fernald League President George Mavridis, who developed the plan, and who could have told Howe that she was wildly overstating its scope. Mavridis maintains the scaled-back center would have occupied 30 percent of the campus or less, under his plan.
Abuse and neglect
While the administration has maintained radio silence on the developmental-center closure issue, organizations such as the Arc and the Mass. Taxpayers and Boston Foundations have used their own websites to make the administration’s case for it.
Many examples of that willingness to help the administration can be found in the MTF/BF report referred to above — particularly in the flawed finding in the report that there are relatively low levels of abuse and neglect of DDS clients in the community system. The report concluded that statistics from the state Disabled Persons Protection Commission show that the community system is at least as safe, if not safer, than the developmental centers.
We examined the MTF/BF’s findings carefully and reviewed the DPPC’s data in question. What we found is that the MTF/BF report made a key mistake in its interpretation of the data. The DPPC numbers only showed that the rate of investigations of neglect and abuse complaints was higher in the developmental centers than in the community system over a three-year period through Fiscal Year 2009. The MTF/BF report erroneously stated that this data involved “substantiated cases” of abuse and neglect.
As we pointed out in a post here, a higher rate of investigations of complaints in the developmental centers may well mean the centers are safer than the community system.
No potent political constituency
Judge Tauro stated many years ago that the intellectually disabled “have no potent political constituency.”
At some point during the past two years, the Fernald Center’s families and guardians learned this for themselves. They learned, in particular, that they had few friends in the Legislature, the Judiciary (with the notable exception of Judge Tauro) or in the media.
With the exception of a handful of legislators, the Legislature has turned its back on Fernald. I’ve noted the Legislature’s move two years in a row to remove Fernald from a cost-analysis requirement prior to shutting the developmental centers.
In the media, The Globe, in particular, seems to have done an editorial about-face on Fernald. In June 2007, The Globe came down unequivocally on the side of Judge Tauro in his decision to keep Fernald open as a residential option. In “The Folly of Closing Fernald,” The Globe wrote that the existing Fernald residents:
…deserve to live out their lives in familiar surroundings without fear of eviction…
Faced with a human services dilemma, the Patrick administration is ducking the issue and whining instead that a federal judge has no business intervening in a state matter. If anyone has a right to intervene, however, it would be Tauro, who monitored Fernald for decades.
The real issue is the wisdom of allowing mentally retarded residents, including many with complex medical problems, to remain in the only home they know and receive the consistent services they need from a staff that includes on-site doctors. This is a question of common decency, not states’ rights. And the right answer is to leave Fernald residents in place and in peace (our emphasis).
But after the U.S. First Circuit Court of Appeals overturned Tauro’s ruling that Fernald remain as a residential option by ruling that he should not have reopened the Ricci v. Okin case, that editorial support from The Globe all but evaporated. In October 2008, The Globe editorialized that the Appeals Court decision was “the beginning of the end for the Fernald Developmental Center…” (The Appeals Court, by the way, did not rule on the merits of Tauro’s order that Fernald remain as a residential option.)
The 2008 Globe editorial, titled “A losing battle for Fernald,” went on to state that there was “little if any legal recourse remaining” for the Center’s residents. And far from criticizing the Patrick administration for “wasting money and good will on litigation,” The Globe now editorialized that the Patrick administration was doing everything right. Unlike the Romney administration, the editorial stated:
…the Patrick administration’s health and human services officials appear willing to help Fernald residents make the transition (to community-based care) as painless and unrushed as possible.”
Painless and unrushed for whom exactly? Here was an administration that was closing developmental centers in Massachusetts without an overall plan of care for the entire DDS system. And here was an administration that was refusing to meet with the families, as The Globe had earlier urged it to do, and was refusing to leave the Fernald residents “in place and in peace,” which The Globe had previously said was a matter of common decency.
The kidnapping of Anna Tross
The eviction process was certainly not painless and unrushed for Anna Tross — a situation which The Globe certainly knew about when it ran its October 2008 editorial.
As we reported here, Anna Tross was taken from Fernald involuntarily in February 2008 and placed in a newly constructed group home in Bedford, after her corporate guardian approved the move. Tross was 91 years old and had lived at Fernald for 50 years. She was blind and had congestive heart failure and moderate mental retardation, but was verbal. Tross was possibly the first Fernald resident to be transferred involuntarily from the facility.
According to testimony at a March 2008 hearing held by Judge Tauro into the circumstances surrounding Tross’s removal from Fernald, Tross had told several people that she didn’t want to leave Fernald. On the pretext that she was being taken off the campus for a cup of coffee, she was driven to the Bedford residence. She never was returned to live at Fernald and she died at the group home a little more than a year later.
According to court records, Fernald guardians and staff who tried to visit Tross in the group home were repeatedly turned away. She was seen only one more time at Fernald, when she was taken to the dental clinic there about six months after she had been placed in the group home. Staff reported that she had lost weight, had a black eye, and appeared sedated.
During the hearing held by Tauro, Tross’s original case manager testified that she had objected to the transfer of Tross and a number of other Fernald residents to the group home. All of those residents had the same corporate guardian, the Arc of Greater Boston, a DDS-funded human services provider. The Greater Boston Arc subsequently stripped the case manager of her caseload and replaced her with a new case manager, who approved the transfers.
The Globe covered the hearing on the Tross case in detail, although, despite our repeated requests, the paper never followed up on the story. Following that hearing, Tauro appointed then U.S. Attorney Michael Sullivan to investigate the case.
Numerous questions surround this case. Among them, why did the Patrick administration choose a 91-year-old woman with congestive heart failure to be among the first people it would seek to remove?
In a previous report to Judge Tauro in 2007, then U.S. Attorney Sullivan had warned that:
…some of the residents at Fernald could suffer an adverse impact, either emotionally and/or physically, if they were forced to transfer from Fernald to another (developmental center) or to a community residence.
Sullivan recommended in that 2007 report that the administration come up with a plan to enable Fernald to remain open.
Certainly, it would not seem to make sense to select a very elderly and ill resident, who had clearly voiced her preference to remain at Fernald, as one of the first to be transferred. At the time of Tross’s transfer, there were some 170 residents remaining at the Center. But Tross and the handful of other Fernald residents who were moved with her to the Bedford residence did not have family members as guardians.
Unfortuantely, Sullivan’s report on the Tross case has never been publicly released. After the First Circuit Court of Appeals overturned his 2007 ruling that Fernald remain as a residential option, Tauro closed the Ricci v. Okin case and sealed the documents.
The battle continues
In its 2008 editorial, The Globe was wrong about at least one other thing, in addition to its statement that the Fernald closure was painless and unrushed. That was the editorial’s contention that there was little if any legal recourse left for the Center’s residents in the wake of the Appeals Court ruling.
At that time, an appeal to the U.S. Supreme Court and administrative appeals were still available as options to the Fernald guardians. The Legislature was also a possible avenue to pursue in keeping Fernald open.
The Fernald families and guardians went on to exercise all of those options. In February 2009, the Fernald plaintiffs, represented by Hofstra University law professor Leon Friedman, filed a petition for Certiorari with the Supreme Court, seeking to restore Judge Tauro’s 2007 order keeping Fernald open as a residential option. The petition also sought to resolve the issue of whether Appeals Courts should give deference to district court decisions in consent-decree cases. In this instance, the First Circuit Court acknowledged that it had not given any deference to Judge Tauro, despite his 35 years of expertise in overseeing the Ricci case.
The Supreme Court declined without comment to issue a Writ of Certiorari to consider the Fernald plaintiffs’ appeal. After that, the Fernald League encouraged its members to file administrative appeals with the state of individual notices of tranfers of their wards. The League has also respected the wishes of those guardians who have chosen to end their personal battles with the administration and to agree to move their wards elsewhere.
Today, we are in the middle of that administrative appeals process. The closure of the Fernald Center has been pushed back to next year, pending the outcome of those appeals.
We’d like to thank all of those members of the BMG community who commented on and recommended our posts, in particular, AmberPaw and ssurette, Justice4All, Mav, Peter Porcupine, adnetnews, truth.about.dmr, PaulSimmons, and others who have made many great contributions over the past three years.
I would also like to commend volunteers such as Marilyn Meagher, the Fernald League’s current president, who personally made the betterment of Fernald and the lives of its residents her own life’s work. And kudos to the volunteer members of the Building Representative Committee at Fernald, who kept close track over the years over the care and conditions in the Center.
If nothing else, we have all worked together to celebrate the value of the Fernald Center and to shine a light on the record of this and the previous administration in carrying out its mandate to care for some of the state’s most vulnerable citizens.