COFAR blog

As we reported last week, the long-closed Fernald Developmental Center has remained a target for opponents of state-run congregate care for persons with intellectual and developmental disabilities.

We noted that on April 4, GBH News, a Boston-based National Public Radio affiliate, reported that the federal government was investigating a privacy breach involving records of former residents after Fernald was closed in 2014.

The privacy breach obviously had nothing to do with how Fernald actually functioned. But as we explained in our post, Fernald’s opponents nevertheless appear to be using the privacy issue to tarnish Fernald’s reputation.

GBH quoted an attorney with the federally funded Disability Law Center as saying that the privacy breach “challenges us to ask about how we allow institutions like Fernald to exist.”

Our concern is that opponents of state-run Intermediate Care Facilities (ICFs) for persons with intellectual disabilities in Massachusetts are using the media to help them make a case for closing those facilities. The administration, meanwhile, is continuing to let the two remaining congregate care ICFs in Massachusetts – the Wrentham Developmental Center and the Hogan Regional Center – die by attrition.

A second attack on Fernald in a week

Since our blog post ran last week, the ICF opponents and the media struck a second time against Fernald.

On April 11, The Boston Globe reported that the State Police kept unsecured records and material for criminal cases on the Fernald grounds, including evidence from homicide investigations. Again, that issue has nothing to do with how Fernald itself was managed while it operated, or with the care it provided.

Yet, both the Globe and the GBH highlighted in their reports a selected portion of Fernald’s history prior to the 1970s – a period in which Fernald and similar institutions in Massachusetts were sites of abuse and neglect.

Not only is that selective history irrelevant to the State Police and patient privacy records scandals, but both media outlets have consistently failed to mention significant and transformative improvements that were made at Fernald and those other facilities starting in the late 1970s.

The Globe, in discussing the latest “blow to the legacy of Fernald” involving the State Police records, mentioned in the story that Fernald “housed patients (my emphasis) with developmental or physical disabilities for more than a century in Waltham before closing in 2014.

“Many residents also experienced abuse at the school,” the Globe added, “including some children who were fed radioactive oatmeal as part of a science experiment.”

GBH, in its report on the privacy breach, mentioned that, “The school (Fernald) is known for troubling medical experiments conducted by MIT and Harvard, where breakfast cereal was laced with radioactive iodine.” (link in the original)

As we’ll discuss below, the radioactive oatmeal experiments took place in the 1940s and early 1950s at Fernald. They were discontinued after that time.

In its statement about the experiments at Fernald, GBH echoed a story it had published on February 27 about people who are seeking records concerning loved ones who formerly lived at Fernald. That article stated, “The Fernald,” as the school was known in the Boston area, has long been shuttered, haunted by reports that it let Harvard University and MIT perform experiments on its children, including lacing their oatmeal with radioactive iodine.”

Upgrades in the 1980s

Despite our reminders to those media outlets, neither the Globe nor GBH mentioned the upgrades in care and conditions that occurred at Fernald and at other similar facilities in Massachusetts under the supervision of then U.S. District Court Judge Joseph Tauro in the late 1970s and 1980s. After 1993, those facilities provided care that Judge Tauro deemed to be “second to none anywhere in the world.”

Far from simply “housing patients,” facilities such as Fernald, Wrentham, and Hogan were, or are, required to comply with strict federal standards under the Medicaid law for ICFs. Those standards are far more rigorous than the requirements for group homes in Massachusetts, which operate under a waiver of the standards.

A third attack on Fernald in one week

GBH’s April 4 story on the federal probe of the privacy breach was a follow-up to an initial article and photo essay by the Globe in January about the matter. Then on April 11, the same day the Globe’s State Police records story ran, GBH ran a story headlined, “Waltham residents, community members ‘enraged’ over plans for the Fernald property.”

That article addressed what the news outlet characterized as citizen outrage over a plan by the City of Waltham for reuse of 16 of the 196 acres of the Fernald campus. GBH noted that the plan would establish “memorial and universal” park areas near Trapelo Road, a “universally accessible” playground, an electric train, a mini golf course, and a spray park “that would make it the largest disability-accessible park in New England.”

The plan sounds quite reasonable to us, especially since it would be disability accessible. But GBH painted the reuse plan in largely negative terms. The media outlet said a resident told them that “she and other Waltham residents are ‘enraged’ with new plans to build a recreational park on part of the property.”

As GBH explained it, Waltham residents are apparently angry that the reuse plan didn’t sufficiently recognize Fernald’s uniquely dark history. As the resident, quoted by GBH, said, “It’s just obscene to me for them to build something that’s for amusement on a sacred ground that should be memorialized and considered more of a contemplative place to respect what’s happened in the past.” (my emphasis)

GBH then stated in the article that a former Fernald resident said “he’d like to see a museum built on the site that documents the Fernald’s complicated past.” And once again, the news outlet informed us that “The school is known for troubling medical experiments conducted by MIT and Harvard, where breakfast cereal was laced with radioactive iodine.”

It’s not clear to us that the entire City of Waltham is enraged by the memory of Fernald or even by the reuse plan. GBH stated that citizens spoke for nearly three hours at a March 27 City Council hearing on the reuse plan that was “prompted by complaints from residents.”

I listened to several portions of the hearing, which is posted online. Some residents during the hearing did appear to refer in negative terms to Fernald’s history prior to the 1970s.

But there were also concerns expressed during the hearing about the impact of the reuse plan on wetlands, and that the recreational activities would be sited too close to their homes on Trapelo Road. Not everyone was outraged over Fernald’s past. As GBH acknowledged, a few residents even expressed support for the plan.

The radioactive oatmeal story

While the improvements overseen by Judge Tauro at Fernald are never mentioned by the media, the radioactive oatmeal scandal is mentioned in virtually every media account written about the former center.

Since February, GBH has mentioned the oatmeal story in at least three stories. The Globe referred to the oatmeal story in its State Police records story and in the January article and photo essay about the privacy breach involving patient records.

The January 10 Globe article described Fernald as follows:

The school was founded in 1848, and its name has become synonymous with American institutional mistreatment of disabled children. Patients were malnourished, abused, and segregated from society well into adulthood. Some were also made unwitting participants in medical experiments, such as the “Science Club,” in which scientists from MIT and Harvard fed children radioactive isotopes in their oatmeal from 1946 to 1953. Quaker Oats was the sponsor.

As usual, no mention was made in that article about Fernald’s history after the 1970s.

Of course, a series of troubling experiments in which radioactive oatmeal was served to Fernald residents did take place in the 1940s and early 1950s. These experiments apparently came to light in 1994.

But while these experiments were shameful, exactly what the State Police records and privacy scandals on the Fernald grounds have to do with those experiments, which took place some 65 to 75 years earlier, is more than a little unclear.

We, along with proponents of the Fernald Center, have, on a number of occasions, contacted both GBH and the Globe to try to correct the record, and to urge them to consider the entire history of Fernald in their coverage.

We have also contacted key members of the state Legislature to let them know that we think Fernald’s history is far richer than what is being reported by the media.

As noted, we think the continuing media coverage of Fernald is an important issue because of the implications this kind of reporting may have on the Wrentham and Hogan Centers and on the future of state-run care in general for some of the most vulnerable people in our society.

We fully support transparency with regard to the care of persons with intellectual and developmental disabilities, and we support efforts to bring the history of that care to light, warts and all. But that history should be told in its entirety, and should not be selectively reported in order to further political agendas.

The Fernald Developmental Center has been closed for a decade, but it remains a political lightning rod for opponents of state-run care for persons with intellectual and developmental disabilities in Massachusetts.

The latest organization to attack Fernald is the federally funded Disability Law Center (DLC), which appears to be using a recently discovered breach of the privacy of former Fernald residents to further tarnish the reputations of Fernald and two remaining Intermediate Care Facilities (ICFs) in the state.

The Boston-based DLC is a legal rights advocacy organization that has long lobbied for the closure of congregate care settings and for the expansion of the state’s network of privatized group homes.

GBH News, a Boston-based National Public Radio affiliate, reported last week that the DLC has filed a complaint with the federal Office of Civil Rights (OCR) alleging a privacy breach involving records of former Fernald residents. The DLC complaint is based on the publication of photos in January by The Boston Globe showing what appear to be large numbers of those records, which had been dumped on the floors of now-abandoned buildings on the campus.

The OCR, which is under the U.S. Department of Health and Human Services, has opened an investigation of the alleged records breach based on the DLC’s complaint.

While we strongly support the OCR’s investigation, it is a statement made by an attorney with the DLC concerning the alleged breach that caught our attention. The attorney is quoted in GBH’s story as saying the following:

Why do these things (privacy breaches) happen to people with intellectual and developmental disabilities, and don’t happen to able bodied people? It challenges us to ask about how we allow institutions like Fernald to exist to begin with, and how we haven’t reckoned with the history of those institutions. (my emphasis)

Leaving aside the fact that privacy breaches can and do happen to both disabled and non-disabled people, we would agree that the breach in patient privacy at Fernald implies a major managerial failure on the part of the state, and we think the administration should take responsibility for it.

But what does a privacy breach have to do with whether Fernald should have existed, and why should the blame for that particular breach be placed on the people who ran and worked at Fernald? It is the state administrators who were in charge of closing Fernald and disposing of the property who should have seen to the proper handling and storage of the residents’ records.

Moreover, in saying the privacy breach “challenges us to ask about how we allow institutions like Fernald to exist,” the DLC attorney appears to be referring to the Wrentham Developmental Center and the Hogan Regional Center, the only two institutions like Fernald that still do exist in Massachusetts. It thus appears that the DLC is using the records breach involving Fernald to tarnish the reputations of Wrentham and Hogan, perhaps in order to push for their closure.

We hope neither the Healey administration or the Legislature falls for this. It’s a red herring.

As we have frequently reported, the administration is effectively allowing state-run residential services for people with developmental disabilities in Massachusetts to die by attrition. This will spell disaster for the care of those people.

The Healey administration and the DLC know full well that many privatized group homes have become the new warehouses of abuse and neglect in Massachusetts. The Department of Developmental Services (DDS) is unable to adequately oversee the system, and is obsessed, as the Globe has reported, with retaliating against families and guardians who dare to complain about poor conditions in corporate provider-run group homes and day programs.

We would note that the DLC, over the years, has turned down a number of requests for legal representation by individuals we advocate for, saying the DLC lacks resources. Yet the DLC is apparently continuing to use its limited resources to push for the closure of two state-run facilities that provide a critical backstop for care in the DDS system, and that are subject to stricter oversight and that provide care that meets stricter federal standards than the standards that apply to group homes.

Consistent focus on the early history of Fernald

It is also apparent, based on the DLC’s complaint and GBH’s coverage of it, that both organizations are interested only in discussing the darkest periods of Fernald’s history prior to the 1980s. There is no mention by either the DLC in its complaint, or by GBH, of the significant improvements at Fernald and other similar institutions in Massachusetts that were made as a result of the intervention of the late U.S. District Court Judge Joseph L. Tauro, starting in the 1970s.

What the DLC complaint does say is that the failure to secure medical records after Fernald’s closure:

…places additional barriers before…historians documenting the practices which took place at this site (Fernald) over decades. This includes promotion of eugenics, squalid living conditions, physical abuse, and as noted in the Globe article, the ‘Science Club’ experiments of feeding children radioactive isotopes in their oatmeal over a seven year period. (my emphasis)

Similarly, GBH, in its article on the DLC’s complaint, stated:

The Fernald, as it was widely known, is home to a dark history of abuse, including reports of research on children by Harvard and MIT that laced breakfast cereal with radioactive iodine. (link in the original) 

But these terrible episodes of Fernald’s history had largely ended by the 1960s – a half century before Fernald was closed over the objections of the families of many of its remaining residents in 2014.

As we have pointed out before, the man for whom the institution was later named—Walter E. Fernald—was initially an active proponent of eugenics laws that were being adopted in the late 19^th and early 20^th centuries in the U.S. But by the 1920s, even Walter Fernald had come to reject the principles of eugenics, and “became a supporter of community placement…” for persons with developmental disabilities, according to the Encyclopedia Britannica. 

The radiation experiments on children took place from the 1940s through 1961, according to the GBH link above. 

This is not to suggest that these abuses and immoral racial theories that involved Fernald should not be studied or publicized in order to warn us not to repeat that history. But to make those events the sole focus of any historical account of Fernald raises questions about the political agenda of those engaging in it.

Judge Tauro noted the positive transformation that Fernald and other similar facilities had undergone when he disengaged in 1993 from his oversight of Ricci v. Okin, the landmark consent decree case that brought about those improvements.

Tauro wrote that the improvements 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.”

Proposed state commission also appears to have a bias

As we have reported, a state commission created by the Legislature in 2022 to study the history of Fernald and other similar facilities in Massachusetts also appears likely to have a similar bias against today’s congregate care models, and a similar fixation on Fernald’s early history.

In February, after GBH published an article discussing the commission uncritically, we informed the news station of our concern about the commission’s potential bias and its proponents’ apparent disinterest in Judge Tauro’s role in improving Fernald and the other facilities. Unfortunately, a noted above, our perspective was not recognized in GBH’s subsequent coverage of the alleged privacy breach.

We certainly hope it isn’t the case that this administration is ready to abandon state-run residential care and that it plans to cite the Fernald privacy breach as a pretext for doing so. So far, we haven’t been able to get the administration to make any sort of public statement about its intentions with regard to either the Wrentham or Hogan Centers, or about the commonwealth’s similarly declining network of state-run group homes.

Until the administration does signal its intentions in this regard, we’re left to read the tea leaves. And as usual, it is the former Fernald Center and how it is still portrayed by its long-time adversaries long after its death that appear to provide those possible clues.