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In establishing state commission on institutional care, Legislature ignored committee-approved language proposed by COFAR
(COFAR Intern Joseph Sziabowski contributed to the research for this post.)
In July, the state Legislature approved the Fiscal Year 2023 budget with an amendment to establish a state commission to study the history of the former Fernald Developmental Center and other institutions in Massachusetts for persons with developmental disabilities and mental illness.
The budget amendment did not contain language proposed last year by COFAR, which would have helped ensure that the commission would not be biased against institutional care for persons with developmental disabilities.
We had expressed concern that the commission, as conceived in previously drafted bills (S.1257, and H.2090), might be used to call for the closure of the Wrentham and Developmental Center and Hogan Regional Center.
As we have reported, key proponents of the commission have promoted the closures of state-run residential care facilities, and have tried to focus public attention solely on the darkest periods of institutional care in this and other states prior to the 1980s.
The commission proponents have declined to acknowledge major improvements since the 1980s in care and conditions in the state’s developmental centers or Intermediate Care Facilities (ICFs). Those improvements were implemented largely due to the intervention of the late U.S. District Court Judge Joseph L. Tauro.
Committee redraft included COFAR language
However, even after the budget amendment was approved in the Senate in May, at least some of the language COFAR had proposed was included in a redraft of one of the original bills.
The redrafted bill (H. 4961), which was approved on June 30 by the Mental Health, Substance Use and Recovery Committee, would give COFAR standing along with other named advocacy organizations to appoint some of the commission members. Each advocacy organization, including the Arc of Massachusetts, would have one appointment.
The redrafted bill also contained our suggested requirement that the commission study the wellbeing of current residents of the Wrentham and Hogan Centers. The previous versions of the legislation included requirements to study the wellbeing only of former state facility residents now living in the community.
We had opposed those previous versions of the commission bill because the versions would preclude assessments of care of current residents of Wrentham and Hogan. We think many, if not most, of those assessments would be likely to be positive.
The Senate budget amendment contains no directives for the study of the wellbeing of either former or current residents of state facilities.
COFAR language superseded
But while the redrafted bill was sent on July 11 to the Health Care Financing Committee, it never emerged from that committee. It has been superseded by the budget amendment, which does not include any of COFAR’s proposed language.
The budget amendment does specify that one current resident and one family member of both the Wrentham and Hogan Centers will be eligible to serve on the commission. The previous bills did not provide for seats for current residents of the facilities or their family members.
However, the budget amendment gives the governor, and not COFAR, the authorization to appoint those Wrentham and Hogan members to the commission. In contrast, the amendment gives three anti-institutional organizations, including the Arc of Massachusetts, the authority to make one commission appointment each.
The budget amendment was bundled with hundreds of other amendments and approved on a voice vote in the Senate in May. As such, the amendment was not subject to a hearing or debate in the Legislature.
The Mental Health Committee’s subsequent redraft with some of our suggested language remains stuck in the committee. As a result, our concerns about possible bias in the commission remain.
Questions remain about the planned commission and its funding
Thus far, we haven’t been able to get answers to some key questions about the planned commission:
- There appears to be no clear indication when the commission will begin working, or how people can apply to serve on it.
- While the budget amendment earmarks $145,000 in funding for the commission, there appears to be no indication what the funding will be used for. The amendment doesn’t specify any staff for the commission, for instance.
- The budget amendment says the commission may study “the independent living movement,” but does not define that movement.
We have made repeated attempts to contact the sponsors of the commission legislation, other key lawmakers, and the governor’s office, which will make many of the appointments to the commission.
Only Representative Sean Garballey, the sponsor of the original House bill to create the commission, got back to us. In a phone call on August 26, Garballey said no decision had yet been made on when the commission will begin operating or when the appointments will be made to it. He suggested the appointment process could take several months, and might be delayed until the next administration.
Garballey suggested that persons who want to serve on the commission send letters to the Office of Governor Charlie Baker and, if necessary, whomever occupies the office after him. The letters should reference the relevant statute (Chapter 126 of the Acts of 2022, section 144) and articulate the constituent’s case to be on the commission.
Garballey said he was open to receiving recommendations or requests, from persons willing to serve on the commission, that he could pass along to the relevant appointing entities.
Asked about the purpose of the commission funding, Garballey said the money will be spent “at the discretion of the commission and its voting process.” He said he didn’t know with certainty what the funding will be used for.
Garballey said it was his “vision for the commission to tell the whole story,” or the entire history of the state institutions, dating back to the 19th century and moving ahead to the more recent positive reforms.
“I’m looking for a factual history, not one with political bias,” Garballey said. “I would be opposed to any effort to push a certain view or co-opt the commission to shut down any institution,” he said. “I would be appalled and disappointed if the commission was utilized in that way.”
We hope Representative Garballey’s vision regarding the commission prevails. But to ensure that is the case, we hope that the Legislature will amend the now statutory language establishing the commission to incorporate our suggestions. We also would like to see a directive added to the language that specifies that the commission will include the reforms of the 1980s in its historical analysis.
DDS client, who had been denied all contact with his mother, suffers third head injury in group home
Nick Alemesis, who has a developmental disability, was sent to a hospital on Friday from his Dracut group home with the third head injury he has suffered in the residence since March, his mother Cindy said.
The latest injury occurred just before Cindy was due to visit Nick at the end of a 14-day ban imposed on her contact with him.
Incompass, the corporate provider that runs the group home, had charged that Cindy’s previous phone contact and visits with Nick were causing him to act aggressively and injure himself.
COFAR last week raised concerns about the ban, contending that neither Incompass nor the Department of Developmental Services (DDS) had made a sufficient case for restricting family contact with Nick.
We noted that this case appears similar to at least two others in which providers and DDS blamed family members for inciting aggressive behavior in DDS clients, and subsequently imposed punitive bans on family contact with those persons.
The 14-day ban on all family and social contact with Nick had been at least temporarily lifted at the end of last week. But Cindy was unable to visit Nick in the residence on Saturday, as had been agreed, because Nick had been taken to Lowell General Hospital. She said she was leaving this morning to visit Nick in the hospital.
DDS is, meanwhile, continuing an effort in probate court to remove Cindy as her son’s co-guardian for reasons that have never been made clear. In 2018, Cindy saved Nick’s life after staff in the group home had failed to take him to a scheduled ultrasound appointment, which would have shown his brain shunt was leaking spinal fluid.
In a text message to Cindy, dated Saturday, the Incompass assistant program manager wrote that Nick had been sent to the emergency room at Lowell General for self-injurious behavior and threatening to kill himself. Cindy maintains that Nick has frequently said he would kill himself if he was forced to remain in the group home. She said Nick is afraid to be in the residence.
Cindy is one of two co-guardians of Nick. The other co-guardian, Donna Nolan, is paid by the Department of Developmental Services (DDS) to serve in that role. Nolan is not related to Nick.
Nolan, along with Jean Phelps, the CEO of Incompass, signed off on a provider document on August 17 that imposed the 14-day ban on all family and social contact with Nick.
COFAR has joined Cindy in urging DDS not to send Nick back to the Dracut group home. Cindy said she is concerned Nick has been abused in the residence.
We suggested last week that Nick be placed at the Hogan Regional Center where we think staff are better trained to care for clients who exhibit aggressive behaviors.
Even if Nick’s injuries have been self-inflicted in the group home, it appears to be clear that Cindy’s contact with Nick is not the primary cause of his aggressive behaviors.
Neither DDS Commissioner Jane Ryder nor Jean Phelps, the Incompass CEO, have responded to an August 25 email from COFAR raising concerns about the ban on contact.
Cindy said Nick was previously injured in the group home on March 16, and was injured again two to three weeks ago. Cindy reported that March 16 head injury to the Disabled Persons Protection Commission (DPPC) because the injury had not been reported by the staff.
DDS, which conducted a limited Administrative Review of the March incident, concluded that there wasn’t sufficient evidence to show that Nick’s injury was caused by staff of the group home, and that the injury had most likely been self-inflicted.