Home > Uncategorized > Fernald may be closed, but it’s still being blamed for the ills of the DDS system

Fernald may be closed, but it’s still being blamed for the ills of the DDS system

The Fernald Developmental Center in Waltham has been closed for some seven years.

But activists who oppose all forms of congregate care are still making the former facility a focus of blame for the failures of the state’s care for people with developmental disabilities, even if it means portraying only one side of Fernald’s history.

It appears the latest effort to denigrate Fernald is a scheduled Zoom panel discussion being sponsored on March 10 by the Harvard Law School.

The discussion, titled “Fernald’s Legacy,” will feature Alex Green, a leader of a protest of a holiday light show late last year on the Fernald campus. Green started a petition last fall to stop the light show, contending a festive show on the campus would be “inappropriate, given (Fernald’s) history of human rights abuses and experimentation on children.”

A promotional text for the upcoming Harvard panel discussion refers to the legacy of institutions such as Fernald as “lurid,” and states that society must “critically and publicly interrogate the role they played in shaping today’s services, systems, and attitudes for persons with disabilities.” (my emphasis)

But dismissing the entire legacy and history of Fernald and similar facilities in Massachusetts as lurid may in fact be failing to “critically interrogate” their role.

Fernald was not the same institution by 1993 that it had been in 1970

Fernald’s past is, of course, notorious and controversial. Until the early 1980s, Fernald and other similar state-run centers were indeed horrendous warehouses of abuse and neglect.

In fact, many of COFAR’s members were plaintiffs in Ricci v. Okin, a combined class-action lawsuit first brought in the early 1970s by the late activist Benjamin Ricci over the conditions at the Belchertown State School. The Ricci lawsuit resulted in a consent decree that included the then Belchertown, Fernald, Wrentham, Dever, Monson, and Templeton state schools.

It was due to the dedication of the late U.S. District Court Judge Joseph L. Tauro in overseeing the consent decree that conditions at Fernald and the other state schools finally began to change.

What Green and other activists fail to understand or acknowledge is the revolutionary change that occurred at Fernald and the other institutions as a result of the litigation and Judge Tauro’s intervention. But acknowledging that change would be inconvenient if their purpose is to portray all congregate care, even as it exists today, as uniformly bad.

We have encountered this one-sided viewpoint repeatedly over the years among advocates, politicians, public administrators, and journalists.

That viewpoint betrays a lack of understanding of the history of care of the disabled in Massachusetts and elsewhere around the country. It also shows a lack of understanding of the strict federal standards under Title XIX of the Social Security Act that state-run developmental centers, also known today as Intermediate Care Facilities (ICFs), must meet.

Acknowledging the change that occurred at Fernald is also inconvenient for corporate group home providers to the Department of Developmental Services (DDS) and their lobbyists such as the Arc of Massachusetts. Since Fiscal 2014, when Fernald was closed, the DDS provider residential line item in the Massachusetts budget has risen by $354 million, or 37%, when adjusted for inflation.

That may explain why the Arc signed on to Green’s petition to stop the light show at Fernald, and why the Arc continues to lobby in favor of further closures of congregate-care facilities and further privatization of DDS services.

Our request to be on the Harvard Law School panel was not accepted

On Monday (March 1), I sent a detailed email to Green and to William P. Alford, chair, and Michael Stein, executive director of the Harvard Law School Project on Disability, which is hosting the panel discussion. In the email, I tried to present a balanced view of Fernald’s legacy, and suggested that the panel include at least one person who is aware of Fernald’s full history and understands its real meaning and importance. Tom Frain, our Board president, was willing to fulfill that role on the panel.

Yesterday, I received a 3-sentence response from Professor Stein, saying only that the event is open to the public and that we should “be respectful of the views expressed by our panelists.” He didn’t accept our offer to serve on the panel.  Presumably, the most we would be allowed to do is participate in a question-and-answer session at the end of the discussion. As a result, we will pass on attending what is likely to be a one-sided event.

Stein’s email to me did not acknowledge, much less respond to any of the points I had raised about Fernald’s legacy.

The following are the points I made in my original email to Stein, Alford, and Green:

Judge Tauro attested to the improvements at Fernald

Judge Tauro, who died in November 2018 at the age of 87, had visited Fernald, Belchertown and the other Massachusetts facilities in the early 1970s to observe the conditions first hand. He noted two decades later in his 1993 disengagement order from the consent decree that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements.

Those improvements and placements, Judge Tauro wrote, had “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.”

It is unfortunate that in a media release that Green wrote in November about the protest of the planned light show at Fernald, he appears to have selectively used only the “snake pit” portion of Judge Tauro’s statement in referring to Fernald and the other facilities. That, of course, reversed the meaning of Tauro’s disengagement statement.

Deinstitutionalization has not been a uniform success 

Judge Tauro believed in the importance of a continuum of care for people with intellectual and developmental disabilities (I/DD), and knew that institutions such as Fernald had an important role to play in it. In his 1993 disengagement order, he maintained that facilities such as Fernald should not be closed unless it was certified that each resident would receive equal or better care elsewhere.

As the years went on, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness. Between 2000 and 2014, the VOR, our national affiliate, catalogued hundreds of cases of abuse and neglect in privatized group homes around the country.

In testimony in 2018 to a legislative committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect of persons in the Department of Developmental Services (DDS) system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Alterio’s testimony came long after the State of Massachusetts had begun to rely primarily on privatized, community-based group homes for residential care of persons with I/DD, and long after the state had phased out and closed all but two state-run ICFs comparable to Fernald.

Our own analysis of more than 14,000 allegations of abuse made to the DPPC showed that the rates of substantiated abuse and neglect per client in those two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — were practically zero between Fiscal 2010 and 2019.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Fernald’s opponents have misinterpreted the landmark Olmstead v. L.C. Supreme Court decision

Those advocates of deinstitutionalization and privatization have consistently misinterpreted the 1999 Olmstead v. L.C. U.S. Supreme Court decision, which held that institutional care is appropriate for those who desire it and whose clinicians recommend it.

The late Justice Ruth Bader Ginsburg wrote the majority opinion in Olmstead, which has been characterized as holding only that unjustified isolation in institutions is “discrimination based on disability.” But that statement is only half the holding of Olmstead.

There was another major element of Justice Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t. As the VOR has pointed out, Justice Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

Justice Ginsburg’s majority opinion held that:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Justice Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

Fernald’s families fought the closure of Fernald from 2003 through 2014 

In 2004, the plaintiffs in original Ricci v. Okin consent decree litigation asked Judge Tauro to reopen the case, arguing that the then Romney administration was illegally trying to close Fernald, and was thereby violating the terms of Tauro’s disengagement order. Those plaintiffs included families and guardians of Fernald residents, and members of COFAR and other advocacy organizations.

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers of 49 residents from Fernald since 2003. Sullivan ultimately recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation, Sullivan maintained in his report to Tauro that while the level of care there might be able to be duplicated elsewhere, the loss of familiar surroundings and people “could have devastating effects [on the residents] that unravel years of positive, non­abusive behavior.”

Tauro subsequently ruled that the families at Fernald must be given the option of remaining there. But the Patrick administration ignored Sullivan’s recommendation and appealed Tauro’s ruling to the U.S. First Circuit Court of Appeals. The Circuit Court of Appeals overruled Tauro, without giving deference to his expertise in the case; and the Patrick administration proceeded to phase down and close Fernald and later three other ICFs of the six remaining in the state.

By 2014, the year Fernald was closed, some 14 families were still fighting legal and administrative battles to keep the facility open for their loved ones because they believed the care there was better than in the community-based system.

Those families came in for relentless media criticism and blame from lobbyists for corporate providers, who were seeking to close Fernald and the remaining state-run centers, and to garner the lucrative state contracts that would result from it.

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided enormous financial windfalls for politically connected corporate contractors. Their executives have garnered huge increases in their personal compensation, but have frequently neglected to pass through the ever higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, we calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By our calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

As noted, the line item in the Massachusetts state budget for DDS-funded residential providers has been boosted by hundreds of millions of dollars since Fernald’s closure. Yet, as Massachusetts State Auditor Suzanne Bump’s office reported in 2019, while that boost in state funding resulted in surplus revenues for the providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Administrations mistakenly believe closing ICFs will save money

Much of the justification for, and reasoning behind, closing developmental centers has been based on the fact that providers pay lower wages than do public agencies to direct-care workers. Successive administrations in Massachusetts have also sought to operate the ICFs as inefficiently as possible in order to make them appear as expensive as possible, thereby justifying their closure.

In 2014, the Fernald Working Group, a coalition of local organizations, had recommended a cost-effective approach to care in that setting. Their proposal was that the Fernald Center be downsized and converted to group homes on a portion of the campus while the remainder of the campus was opened to development, open space, and other uses.  Similar proposals had been made over the years by the former Fernald League and COFAR.

But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other ICFs in the state, contending the state would save tens of millions of dollars a year in doing so. They never considered any of the proposed alternatives to the closures.

That there isn’t necessarily a long-term fiscal savings in transferring people from developmental centers to decentralized, provider-based care has been acknowledged even by one of the leading proponents of deinstitutionalization in the Obama administration.

In a law journal article, Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, acknowledged that any cost savings in closing developmental centers “will shrink as people in the community receive more services.”

He added that a significant part of the cost difference between institutional and provider-based care “reflects differences in the wages paid to workers in institutional and community settings — differences…that states will face increasing pressures to narrow.”

Today, as noted, two ICFs remain in Massachusetts – the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers. We rarely, if ever, hear that families or guardians are unsatisfied with the care there.

Mary Ann Ulevich, a COFAR member and a member of the Wrentham Board of Trustees and of the Wrentham Family Association, wrote to DDS Commissioner Jane Ryder in November 2019 in praise of the care her cousin, Tom Doherty, had received at WDC. Tom had died on October 24 at the age of 68. Ms. Ulevich wrote:

I just want you to know how proud you can be of the work carried out at WDC. I know that the philosophy of care for those with intellectual disability is to provide support to remain in their community with their families, with guidance and services. I fully support this contemporary approach, but acknowledge that there are many who because of their history and challenges, and/or because of the progression of their needs combined with diminished family and community resources, can and do thrive in facility-based care.

Here are additional accounts of the value that families put today on the care at WDC.

Apparently, if we keep blaming Fernald and other congregate-care facilities for all of the dysfunctionality of the DDS system, we will not have to admit that the problems with abuse and neglect and financial mismanagement in the system primarily lie elsewhere.

  1. Clare Stone
    March 3, 2021 at 2:21 pm

    Thanks once again David for your patience and persistence in clarifying these many important points regarding the vulnerable people in life.
    The only thing that is not confusing to recognize in the saga of deinstiluzation is the money going to the top workers/owners.
    My sister spent most of her life at Fernald
    so I know the history. Judges Touro and Ginsburg spelled everything out correctly but people do not care to listen.
    Off-hand I would be somewhat against a light show on Fernald grounds.
    Here is an opportunity to face our past shortcomings in the treatment of people and get something going in that space to help the many people today in need of a place to live.
    Let us get ready for the light show then.

    The hell with Harvard Law.
    Clare Stone
    Belmont MA

    Liked by 1 person

  2. Mary Ann Ulevich
    March 3, 2021 at 6:15 pm

    I will plan to register and attend the open meeting next week. Will be ready with a statement. Thanks David for alerting us to this…

    Liked by 1 person

  3. Dorothy Rouleau
    March 4, 2021 at 12:30 pm

    March 4, 2021
    Thank you Dave for a comprehensive and truthful report. It is obvious that those who denigrate the legacy of the former Fernald Developmental Center and other such Centers are individuals and organizations that look to benefit from privatized care in the DDS system. This ignores those who live and have lived in congregate care facilities and know them well and their benefits. In the closure of Fernald, equal or better did not exist. The closure caused the degradation of many lives, if not all. The Fernald Developmental Center was a beacon of excellent care that grew from the depths to become one to be proud of in the Commonwealth of Massachusetts. Alex Green speaks of Fernald’s history of human rights abuses and experimentation on children; abuses condoned by MIT and his very own Harvard University.

    Liked by 1 person

    • March 4, 2021 at 12:56 pm

      Thanks, Dorothy. That is interesting information about MIT and Harvard.

      Like

  4. Anonymous
    March 4, 2021 at 12:36 pm

    Thank you Dave. We are knowledgeable of the situation
    Regina Davidson

    Liked by 1 person

  5. Mary Ann Ulevich
    March 4, 2021 at 1:45 pm

    Registration for this event is online. I registered last night and plan to listen on Wed.

    https://hpod.law.harvard.edu/events/event/fernalds-legacy

    in my confirmation email, there is a request to send in questions ahead of time…maybe we should ask why COFAR is not included on the panel despite our offer? I would be happy to ask that, or any other question. I am not as knowledgeable as many of you about the history, but am willing to submit any suggestions should interested parties be unable to participate
    Mary aNN

    Like

    • March 4, 2021 at 2:16 pm

      Mary Ann, I would ask if the panel is willing to acknowledge that care and conditions at Fernald were greatly improved in the 1980s. And would they agree with Judge Tauro’s assessment that by 1993, Fernald was part of a system of care that was “second to none anywhere in the world?”

      Like

  6. Anonymous
    March 4, 2021 at 5:38 pm

    As usual COFAR, you nailed it!

    Seems like certain people are determined to continue their one-sided narrative at all costs. And apparently, COFAR, with their views, threatens that. What would happen if people started to think for themselves and realize that any time three or more unrelated persons who depend on others for their care and also live together, that that *is congregate care*.

    Liked by 1 person

  7. Ed Orzechowski
    March 5, 2021 at 6:06 pm

    It is more than unfortunate that COFAR should receive such a curt response from the Harvard Law School Project on Disability. Yes, of course, they have the right to select their own panelists for their own event. But not to respond to the points raised here indicates an unwillingness to consider other opinions and information. One more example of the silo nature of communication these days, in this case from academia.

    Liked by 1 person

  8. Anonymous
    March 16, 2021 at 4:31 pm

    Watch the video here:

    Like

    • March 16, 2021 at 10:23 pm

      Thanks to anonymous for posting this video. I’ve listened to the opening portion of it so far — through the introduction by Alex Green, who was the organizer of the protest late last year of the holiday light show at Fernald.

      I think Green presented a fairly balanced account of Fernald’s history and legacy. His account was a lot more balanced than I thought it would be, especially given the promotional text for the seminar that referred to Fernald’s “lurid legacy.”

      Maybe the nature of Green’s light show protest was misunderstood, or maybe he has changed his message somewhat. In his intro in the video, he recognized the Ricci lawsuit and noted that it had brought Fernald and the other developmental centers in Massachusetts “out of the dark ages,” and that “a generation of new employees” began to work in the field.

      Green also said the reason for the closures of Fernald and other centers was the value seen in the land they were situated on, and that this led in many cases to “abrupt transitions” of residents out of the facilities as families were “ignored or overlooked.”

      He was very positive about the investments that had been made at Fernald, such as the heated pool, which he noted was used by people with I/DD from around the state. He blamed the City of Waltham for intentionally ignoring the upkeep of the pool after Fernald was closed, allowing the pipes to burst.

      It seems Green’s protest last year was largely against the City, which he contends broke promises to maintain services for people with I/DD there and to erect a memorial to the residents of the center. Ed Orzechowski, a COFAR Board member, has called for the same type of remembrance at the former Belchertown State School.

      What I think Green left out in his talk is the failure of the community-based system to adequately replace Fernald and the other ICFs that were closed, and he left out the state’s role in pushing people out the door over the objections of Judge Tauro.

      Green said there is a bill pending, sponsored by state Sen. Mike Barrett and Rep. Sean Garballey, to establish a commission to investigate the history of the state institutions. We’ll look into the bill.

      While I was working on the blog post about the seminar, I sent a detailed email on March 1 to Green and the heads of the law school Project on Disability, laying out our position on Fernald’s history, and voicing our concern that the legacy of Fernald might be misrepresented in the seminar. Green hasn’t responded to my email, although he said in the video that he does respond to emails. Maybe he will respond.

      Like

  9. Anonymous
    March 16, 2021 at 4:38 pm

    “The experiments were conducted by Harvard University researchers…”

    https://m.facebook.com/story.php?story_fbid=4039956596028038&id=927871900569872&__tn__=-R

    Like

    • March 16, 2021 at 10:30 pm

      Interesting. I hope the commission that is being proposed to investigate the state institutions also investigates Harvard’s alleged role here.

      Like

  10. Ed Orzechowski
    March 17, 2021 at 9:55 am

    I watched the Harvard Law School webinar, and did not find it denigrating. I thought it was a fair presentation, particularly sensitive to former Fernald residents, three of whom were panelists.

    Like

    • Mary Ulevich
      March 17, 2021 at 1:19 pm

      Hi Ed, I agree with your comments about the webinair.
      I am curious about the Project, and also about the bill being put forward by Rep. Barrett about setting up a Commission to study the history of institutional care. The recommended composition of the Commission does not specifically include family members. I suppose one of us could be recommended as one of the generic appointees, but we would need to advocate for that.
      I so appreciate that Dave and Colleen are on top of this…
      Mau

      Like

      • Ed
        March 17, 2021 at 1:23 pm

        You’re right. Lack of family representation is a glaring omission.

        Like

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: