COFAR blog

The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.

That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.

At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.

In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.

The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.

For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.

Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.

COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.

We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.

As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community placements 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.”

Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.

The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.

The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.

We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.

In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”

Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”

We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.

Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”

Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”

Commission’s written charge needs to be expanded to recognize ICFs today

In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”

The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.

“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said. 

It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.