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Ed Orzechowski receives the Ricci award and calls for memorial to residents of former Belchertown State School
Ed Orzechowski, a former COFAR vice president, accepted the 2019 Dr. Benjamin Ricci Commemorative Award on Wednesday, and called for the establishment of a “lasting memorial” at the former Belchertown State School.
The annual Ricci award celebration recognizes the accomplishments of individuals served by the Department of Developmental Services, and the dedication of caregivers and advocates.
“I urge the Department of Developmental Services, the Legislature and local officials to create a lasting respectful memorial, a tangible commemoration to all the living and deceased former residents of Belchertown and the other institutions,” Orzechowski said in accepting the award. “What they (the Belchertown residents) experienced, what they endured, must not be forgotten.”
Ed Orzechowski accepts the Benjamin Ricci award at the State House on Wednesday. At left is Orzechowski’s wife, Gail, who has worked with Ed in advocating for residents of DDS facilities.
Orzechowski authored “You’ll Like it Here,” a gripping book published in 2016 about the life of Donald Vitkus, a one-time resident of the former Belchertown State School.
Orzechowski’s book chronicled Vitkus’s childhood in the 1950s at Belchertown, which was then notorious for its inhumane and unsanitary conditions. The book also described Vitkus’s battle throughout the rest of his life to come to terms with his past at Belchertown.
In addition to serving for many years on COFAR’s Board, Orzechowski was president of the Advocacy Network, a former advocacy organization for the developmentally disabled in western Massachusetts.
In Wednesday’s State House ceremony, DDS Commissioner Jane Ryder presented the Ricci award to Orzechowski. The award is named for Ben Ricci, the original plaintiff in the 1970s landmark federal class action lawsuit, Ricci v. Okin, that brought about upgrades in care for residents of Belchertown and other Massachusetts facilities for the developmentally disabled.
During the Wednesday ceremony, Orzechowski noted the importance of the efforts of three key individuals in the Ricci case, including Ricci himself, the late U.S. District Court Judge Joseph L. Tauro, who oversaw the class action lawsuit, and Beryl Cohen, the attorney for the plaintiffs. “Without the convergence of these three men, conditions for people who were called retarded—clinically labeled idiots, imbeciles, and morons—would not have improved the way they did,” he said.
Orzechowski also talked about his friendship with Vitkus, who died in January 2018 and was buried as was his wish in the Warner Pine Grove Memorial Cemetery for residents’ at Belchertown. In the course of writing the book, Orzechowski and Vitkus had become close; and a year ago, when Vitkus himself was selected to receive the Ricci award posthumously, Orzechowski was on hand at the State House to accept it on Vitkus’s behalf.
During Wednesday’s ceremony, Orzechowski also thanked his wife, Gail, for her advocacy efforts on behalf of her sister, Carol, who was a Belchertown resident during the period of abuse and neglect.
“I know Carol would thank you Gail, if she could,” Orzechowski said. “You are the one who has fought so hard for Carol and the human rights of so many others. You and the other family members and caregivers here have spoken up for your loved ones, and fought for the necessary funding to sustain their care. I only wrote a book. You live it every day. You deserve applause.”
Gail Orzechowski joined Ed at the podium at that point.
In discussing his call for a memorial at the Belchertown School, Orzechowski noted that he recently visited the grounds of the school, which was closed 26 years ago, and found the place to be “barely recognizable.” The town, he said, has built a new police station there, and there is now a modern continuing care facility on the site.
There are aso plans to construct a substantial brewery on the grounds. All that remains of the state school, he said, is the crumbling administration building and a few former residence halls.
Orzechowski said that while he has heard of plans for a walking trail with plaques to be a remembrance, he felt there needs to be something more substantial. He called for a museum on the grounds and for a memorial, a place for archives, and photos and exhibits.
“Many of us worked hard to close the institutions… the redevelopment of those properties is to be expected…and there’s much to be celebrated in the improved lives of our citizens with developmental disabilities,” Orzechowski said. He added that, “Today Wrentham and Hogan provide much-needed services for their residents, and community settings are much more homelike.”
At the same time, Orzechowski said, “there’s an irony here. What happened in the twentieth century at Belchertown, what happened at Monson, Dever, Glavin, Wrentham and Fernald—eugenics, radiation experimentation, day-to-day abuse and neglect—cannot be erased and should not be forgotten.” He added that existing archives involving residents of the state school are scattered and disorganized.
Orzechowski is currently at work on a second book about another Belchertown state school resident named Darlene. He said that when he told her about what is left of the institution, she said, “It’ll be like we were never there, like we never existed.”
DDS proposes to reduce services and family rights in care plans
The state Department of Developmental Services is proposing changes to its regulations that we believe will take away guardian and family rights and water down the scope of services that are listed in individual clients’ care plans.
We at COFAR view these proposed changes as an attempt to reverse critically important gains made by the intellectually disabled and their families and guardians in Massachusetts from the 1970s through the 1990s.
We’re joined in our concerns by the Wrentham Association, a COFAR member organization and one of the original plaintiffs in the landmark Ricci v. Okin federal consent decree case that upgraded care of the intellectually disabled in Massachusetts. In written comments submitted to DDS last week, the Wrentham family group maintained (and we concur) that the proposed changes to the regulations would violate the historic 1993 Disengagement Order in the Ricci case of U.S. District Court Judge Joseph Tauro.
As the Wrentham Association letter noted, the Disengagement Order requires DDS “to continually evaluate the needs of each individual class member and to develop strategies to address those needs.” Several of the proposed changes to the DDS regulations “would substantially dilute” client care plans, known as Individual Support Plans or ISPs, and would exclude or limit family participation in the ISP process, the letter stated.
As we noted in our own comments on the proposed regulations:
The ISP process is fundamental to the provision of adequate supports and services to some of the most fragile and vulnerable members of our society…The protection of the rights of the individuals, family members, and guardians involved is central to the ISP process and the Disengagement Order. We therefore strongly oppose efforts to begin chipping away at those rights, as the proposed regulations appear to do.
Among the key proposed changes by DDS is the elimination of the requirement that services be listed in each client’s ISP “without regard to the availability” of such services. A second proposed change would take away the current requirement that the ISP contain strategies to address the “unmet support needs” of clients.
These were key concerns of Judge Tauro’s Disengagement Order — that the ISPs be drafted first and foremost to identify the needs of the client and that the Department then come up with funding strategies to meet those needs. The proposed changes would eliminate that dynamic.
In addition, DDS is proposing to change its regulations to take away rights of family members to participate in the ISP process and even to schedule a meeting with a DDS service coordinator to have the ISP explained to them.
Diane Booher, a Fernald guardian, testifies against proposed DDS regulations changes during a sparsely attended public hearing at the Worcester Public Library on June 15.
In our comments submitted to DDS, we added that the proposed changes would also appear to violate a key provision of the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that individuals with developmental disabilities and their families are the “primary decision-makers” regarding the services and supports they receive.
On Friday of last week (June 15), DDS held a public hearing on the proposed regulations, which, to my surprise, attracted few attendees. I arrived at the scheduled start of the hearing at the Worcester Public Library at 10 a.m. and was the only person in the audience when DDS Commissioner Elin Howe opened the proceedings. Soon after, two other people arrived to testify — Diane Booher, a Ricci class representative from the Fernald Developmental Center and the guardian of three men who still reside there; and a representative of Vinfen, a major nonprofit operator of group homes in Massachusetts and other states.
Booher maintained in her written testimony that “there is no question” that the proposed changes to the regulations would violate Judge Tauro’s Disengagement Order.
The Vinfen representative appeared to have some technical issues with the proposed changes, but no major objections — a position I didn’t find surprising. Vinfen and other group home providers will get the same state funding whether the ISPs contain strategies for unmet needs or not.
I looked around for someone from the Arc of Massachusetts. Surely, they would be rallying to defend the rights of families and DDS clients? I guess not.
At about 10:45 a.m., Commissioner Howe called a recess in the hearing, after the three of us had testified and no one was left to speak. I left shortly after that. If a flood of people arrived anytime after I left and before the scheduled close of the hearing at 3 p.m., I haven’t heard about it.
In addition to the proposed changes that would water down the scope of services in ISPs, here are some of the other proposed changes to the regulations (115 CMR 6.20-6.25), which we find the most troubling:
- Addition of language giving guardians and individuals the authority to exclude family members from participating in ISP planning and the ISP process. This is particularly concerning to us in cases in which corporations or attorneys are appointed as guardians of individuals and are paid by DDS.
- Exclusion of family members from the list of persons receiving periodic updates from group home providers regarding the implementation of the ISP.
- Removal of language stating that families and guardians have a “right” to a meeting with the service coordinator to have the ISP explained to them within 10 days of its receipt.
- Removal of language requiring the service coordinator to explain ISP appeal rights to individuals, guardians, and family members.
- Removal of language that a service coordinator must have the approval of the family to waive a meeting to discuss changes to the ISP.
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