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Proposed commission on former DDS state schools needs to acknowledge upgrades in care
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.
Families still restricted in visiting loved ones in DDS system even if residents have been vaccinated
Throughout the COVID-19 pandemic, we have questioned overly restrictive and sometimes contradictory family visitation policies imposed by both the Department of Developmental Services (DDS) and its residential providers.
What seems surprising is that now, with most residents in the system apparently having been vaccinated, those restrictive and contradictory policies appear to be continuing.
In response to a query sent to our members last week, several said they were continuing to be sharply restricted or even prohibited entirely from entering group homes in which their loved ones are living. Some of those family members are nevertheless allowed to take the residents home for visits.
As we have reported, while most residents of group homes and developmental centers in the DDS system appear to have been vaccinated, a significant percentage of staff have not been. Yet, the restrictions on visitation or contact appear to be aimed exclusively at family members and guardians of residents.
“To hold families and guardians to a higher standard than direct care is unfair and makes no sense,” said Thomas J. Frain, COFAR Board president. “Family visits at this time should not be any more restrictive than they were before the crisis. But some residential managers are clearly using COVID restrictions as a weapon to control family access to their loved ones.”
In an email sent Monday (May 17) to DDS Commissioner Jane Ryder, I asked why visitation restrictions were still ongoing in residences in which all residents have been vaccinated. Ryder, to date, has not responded.
DDS visitation guidance, dated March 19 of this year, continues to give providers discretion to limit the number of visitors and restrict visits under any circumstances the providers deem pose a threat to safety. The guidance document states that any such restrictions should not be arbitrary.
While the March guidance does allow visitors who are fully vaccinated to meet with vaccinated residents in their rooms, it states that providers must restrict all visitation if any staff are infected or presumed infected within the past 14 days. It apparently doesn’t matter under the policy whether all residents have been vaccinated or not.
Family members and guardians cite arbitrary restrictions
A number of other COFAR members said this past week that they have been subjected to differing and sometimes seemingly arbitrary restrictions on visitation.
Colleen Lutkevich, COFAR executive director, said all residents in her sister’s house on the Wrentham Developmental Center campus have been quarantined from May 11 through May 21 because two staff tested positive for COVID. Yet, all residents have been vaccinated, she said, and none are currently testing positive.
Frain said he, himself, was subjected to what appeared to be an arbitrary restriction by staff after his brother experienced a medical emergency in his group home in March. Frain had entered the residence along with ambulance personnel to attend to his brother.
When the emergency was over, Frain said, he was singled out by two staff members and told he alone must leave by the back door of the residence because he hadn’t been tested on entering for COVID. Frain said he complied with the order, but feels it was unnecessary and was possibly an effort to personally humiliate him as a family member.
One COFAR member said that even though her son has been vaccinated — and she believes all other residents of his group home have been vaccinated as well — she and her husband have not been allowed to enter the residence. Nevertheless, she said, they are allowed to take their son home for overnight visits.
“It makes no sense,” the COFAR member wrote in an email. “At least we can be with him, so I really can’t complain, but it would be nice to see what is going on in the house.”
As is the case with a number of families, the COFAR member said she needs to go through her son’s clothes for the seasonal change to spring. Because of the no-entry restriction, the staff brought his belongings to the backyard. “I cannot bend over,” she wrote, “so it was difficult.”
Yet we were told that in another group home even unvaccinated family members were allowed inside to their loved-one’s bedroom to change his wardrobe to spring.
Another COFAR member, who wanted to change her son’s clothing from winter to spring, said she is currently allowed to enter the residence once a week. She too can take her son home at any time.
Another provider requires a week’s notice prior to visits by family members. In yet another case, visitors are allowed in the house, but only for a maximum of 30 minutes.
COVID infection rates not correlated with restrictions on family visits
State data show the rate of COVID infection in the DDS system among both residents and staff declined earlier this year, reaching lows at the end of March. But since then, as recent weekly online state facility reports show, the decline has stalled, and rates of infection have held steady.
As of May 11, 10 residents and 14 staff in the state-operated group home system continued to test positive for COVID. As of that date, 37 residents in provider-run group homes and an unreported number of staff continued to test positive.
There were as many as 5 deaths among residents in the group home system due to COVID in the seven days prior to May 11. No data on COVID-related deaths are available for staff.
While administration officials have not responded to our requests for comment on the matter, we think the decline in the COVID rate in the DDS system from January through March was largely due to the vaccinations of most of the residents and at least some staff, which began in January.
Although data is lacking, we think the continuing presence of at least some COVID in the system since the end of March may be due to the apparent continuing resistance of a significant number of staff to getting the vaccine.
As far as we can tell, residential DDS providers have continued to impose the same types of restrictions on family visits that they imposed prior to the first vaccinations in January. So, we don’t see that those restrictions as related to the decline in COVID rates since January or to the continuing presence of infection in the system.
It’s time, as Tom Frain said, for DDS to issue new, unambiguous guidance to providers to restore visitation policies to what they were prior to the pandemic.
Stan McDonald, who fought for guardianship and visits from his son, dies
Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.
We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).
Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn.
In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.
In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.
In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen. Their claim appears to be backed up by the district court record and a subsequent police report.
The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call. The nature of the threats was not disclosed. In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother. Stan and Ellen said the punch was accidental.
Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans. He was described in one care plan as “kind and friendly to others,” and as “a polite man.”
While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”
We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.
Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.
Successful advocacy for Andy
While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder resulting in involuntary, repetitive body movements.
Supporters urge restoration of Stan McDonald’s guardianship of Andy
In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”
John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”
And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian.
Guardianship bill
H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.
The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.
If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.
In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).
DDS reports drop in integrated employment of clients in the state from 2019
The Progress Report describes the past year as “incredibly challenging for day and employment providers and the individuals and families they serve.” The report notes that in March 2020, on-site day programs were shut down as a result of the pandemic, and were reopened in July under strict social distancing rules.
The DDS day program line item in the state budget is used, in part, to fund job skills training and other activities to help clients make the transition to the mainstream workforce.
The Progress Report states that mainstream workplaces also shut down or operated at reduced capacities during Fiscal ’20 and ’21, and stated that those shutdowns and reductions limited the number of individual and group-supported employment opportunities available.
Nevertheless, the Progress Report data indicate that after the day programs were reopened in July 2020, the numbers of clients entering integrated employment showed virtually no increase.
The report does not make specific projections regarding integrated employment in the coming fiscal year, but says that “it is expected that a similar number of adults will transition to these services in FY2022.”
Numbers entering day programs outpaced integrated employment
As noted, the Progress Report indicates that the numbers of clients being placed in day programs after the closure of the sheltered workshops has exceeded the numbers entering integrated employment.
While the numbers of clients placed in integrated employment rose by 20% from 2015 to October 2019, the number of clients in DDS day programs increased by 43% over that same period—a percentage more than twice as high—and those numbers continued to increase though March of this year. (See graph below)
Difficulty in finding jobs acknowledged
The Fiscal ’21 Progress Report acknowledges the state has experienced “difficulty obtaining job opportunities for individuals with significant disabilities who require customized work.” The report further notes:
- Transportation challenges for people seeking or working at integrated jobs in the community, especially in geographic areas where there are limited public transportation and/or para-transit options.
- Individual concerns with the impact on Social Security and other public benefits when individuals earn more income.
In addition, the report states that many day program providers are experiencing “workforce challenges … which result in higher vacancies and turn-over that have an impact on access to and continuity of services.”
Despite those problems, the governor and Legislature have so far proposed cuts in the Fiscal 2022 state budget for both DDS day program and transportation funding. We are continuing to advocate for a restoration of funding to the day and transportation accounts.
Equally importantly, we believe work activities are needed in the day programs to make up for the lost opportunities resulting from the closures of the sheltered workshops.
State House approves cuts to DDS day program funding, increases for provider group homes
The House budget would add $100,000 to the governor’s proposed Fiscal 2022 funding for state-operated group homes (line item 5920-2010). However, when adjusted for inflation, even the House budget proposal would amount to a cut in funding for this line item of somewhat less than 1%. (We are basing that assessment on numbers from the Massachusetts Budget and Policy Center’s “Budget Browser.”)
The two remaining developmental centers would similarly see their funding cut in Fiscal Year 2022 by $2.1 million under the House budget, when adjusted for inflation (line item 5930-1000). Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.
COFAR is continuing to raise concerns regarding the ongoing under-funding of state-run DDS programs. We believe this has led to unchecked privatization of programs and services.
We are also concerned that even within provider accounts, we may be seeing a permanent pullback in funding for day programming, with much of that funding ultimately going to provider-run group homes.
Last month, we sent an issue paper raising those concerns, among others, to Senator Adam Gomez and Representative Michael Finn, the new chairs of the Legislature’s Children, Families, and Persons with Disabilities committee. You can find our issue paper here.
COFAR blog 