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DDS says Waltham group home provider must check all homes for insect infestations and plan for possible relocations of residents
As a Waltham group home reopened last week after a month-long shutdown due to a cockroach infestation, the Department of Developmental Services (DDS) ordered WCI, Inc., the corporate provider that manages the residence, to assess all of its group homes for “any hazards.”
In a Resolution Letter, dated March 6, DDS Area Director Joan Thompson also stated that the cockroach problem, which resulted in the February 8 shutdown of the Waltham residence, had actually been a “preexisting issue” there.
Thompson said the residence had been “treated a number of times in recent months.” However, it was only in the latest shutdown, which occurred on February 8, that the residents were relocated.
According to the Resolution Letter, the residents had not been relocated during the previous infestation treatments, which presumably involved the application of pesticides in the home. The letter directed WCI to develop “protocols to relocate residents” if “chemical treatments of any kind are needed.”
In the latest instance, the five group home residents were evalucated to a Marriott Hotel in Woburn where they stayed until their return to the Waltham group home last Tuesday (March 7).
Christine Davidson, whose son John is one of the group home residents, said today that she had not been informed of the previous insect exterminations at the home. She said, in fact, that she happened to walk into the home one afternoon a few months ago, unaware that a pesticide treatment had just been done in the residence.
The home was empty at the time, she said, because the four of the residents were at day or work programs and her son had been taken out for lunch.
DDS claims it wasn’t notified of the insect problem
The Resolution Letter also stated that families, guardians, and DDS had not previously been notified of of the ongoing insect problem in the home. However, Christine said that both she and her son had repeatedly complained to WCI over the past year about the roaches and about other unhygienic conditions in the residence.
“John had complained about bugs being in his (breathing machine) mask. Nobody listened to him,” Christine said. She sent us a photo last month of at least two roaches in John’s breathing machine. She had taken the photo while her son was home with her for a visit on the first weekend after the evacuation of his group home.
Christine previously sent us photos of potentially unhygienic conditions in the home in February 2022.
The March 6 Resolution Letter stated that the latest infestation was brought to the attention of WCI when a DDS staff person in the home observed the insects. “Of additional concern is that at the time of the DDS visit, one staff person stated that they were going upstairs to eat to be away from the roaches,” the Resolution Letter added.
DDS does not address allegedly unhygienic conditions
The DDS Resolution Letter was the apparent conclusion of an investigation done by the Department in response to a complaint filed by Christine following the February 8 shutdown of the group home.
In her complaint, Christine stated that the home staff were “not providing proper living conditions,” and that the home was “infested with rodents and roaches,” according to a February 17 DDS letter stating that the complaint would be investigated.
The March 6 DDS Resolution letter, however, did not specifically address Christine’s allegations of unhygienic conditions in the residence, or order the home to be kept in a cleaner state. The letter stated only that WCI must provide “a detailed plan of scheduled visits …to all homes by maintenance and qualified management staff to assess living environments for any hazards.”
Christine said she didn’t think that latter statement was necessarily a requirement that WCI keep the home cleaner. She said, in fact, that a WCI executive told her that the provider will start sending a cleaning crew to the home twice a month. But she said this was at her suggestion and was not the result of a directive from DDS.
Christine said, however, that WCI did not respond to her request that her son be provided with a new bed and bedding following the latest infestation. She said she toured the home on March 7, the day it reopend, and that “everything still looked grimy. I had expected to see the home enhanced. They got rid of the bugs, but the place still looks dirty. Everything is still topsy turvy.”
She said WCI did send an pest control inspector to her own house to make sure the infestation did not spread to it after her son came home from the hotel on weekends to visit her. She said the inspector determined that her home does not have roaches.
We’re glad to hear the bugs are gone from the Waltham residence, at least for the time being. But we are also concerned about the lack of communication from DDS on this matter. As I’ve mentioned before, DDS Commissioner never responded to an email query I sent her about the group home shutdown in mid-February.
In her March 6 Resolution Letter, Thompson appeared to blame at least some of the lack of communication on WCI.
But Christine said she still has not received answers from DDS itself to her ongoing concerns about the house. She said that despite an initial promise from the Deparment to “work collaboratively” with her in the wake of the latest infestation, DDS officials from Thompson’s office have not returned her phone calls.
UPDATE: Mother’s house may now be infested with insects from group home ordered shut down last month
As Christine Davidson and her son John wait for word as to when John’s Waltham group home will reopen after an infestation of cockroaches and possibly rodents almost a month ago, Christine said her own house may now be infested with the insects.
The group home, which is run by WCI, Inc., a corporate provider to the Department of Developmental Services (DDS), was ordered temporarily shut down by the state on February 8 due to the infestation. Since then, John and four other residents of the group home have been staying in a Mariott Hotel in Woburn.
Christine said that while she still hasn’t been told when the group home will reopen, an executive with WCI invited her to meet him at the residence on Tuesday morning (March 7) to inspect it. She said she was told DDS is scheduled to inspect the home today (March 6).
Christine said that when John first came home for a weekend visit with her last month after having been evacuated from the group home, she saw cockroaches crawl out of his wheelchair. She also found the insects in his CPAP breathing machine, which the group home staff had sent to Christine’s home that weekend. Last week, she said, a roach crawled out from underneath the refrigerator in her kitchen.
“It’s disgusting,” said Christine, who said she has done everything she can to keep her home clean. “This whole thing has been an unending nightmare.”
A letter sent by DDS to Christine on February 17 states that a complaint about the group home infestation was reported to DDS that day, more than a week after the incident. The DDS letter stated that, “the home is infested with rodents and roaches,” and added that DDS would investigate the complaint.
Christine said she doesn’t want her son going back to the residence until WCI provides him with a new mattress in his room, new bedding, and new curtains for his window. But she said the WCI excecutive has so far declined that request. “He (the executive) said if they were to do that for John, they would have to do it for everyone,” Christine said. “I said ‘of course, you should do it for everyone.'”
In an email sent on February 15 to Christine, Jessica Belcher, assistant DDS area director, termed the insect infestation “completely unacceptable,” and said the Department was “holding (WCI) accountable to fix the problem and create a plan so that something like this does not happen again.”
Belcher, whose email didn’t mention the possibility of a rodent infestation as well, also said that DDS would work “collaboratively” with both Christine and her nephew George Papastrat, who are John’s co-guardians, “so that the disruption causes the least amount of stress possible for John.”
Christine said this past weekend, however, that she has lately had trouble reaching Belcher. “I called three times this past week and haven received a call back,” she said.
Christine said that shortly after the group home was shut down, Belcher was responsive to her, and even suggested that John might be able to move to another WCI group home in Waltham. Christine said she was willing to entertain that idea, but was told more recently by WCI that the second residence couldn’t accommodate John, who needs a wheelchair, because the only available bedroom in it is on the second floor.
Christine said she asked Belcher whether a state-operated group home is available in the area for John, but said she has not received an answer to that question.
Christine said she was glad to hear that DDS intends to hold WCI accountable in the matter, but doesn’t understand why nothing was done about her complaints over the past year about unhygienic conditions in the group home. In February 2022, Christine sent us photos of potentially unsanitary conditions inside the group home.
Christine also said the WCI executive told her the provider is offering to exterminate the cockroaches in her own home, but that he did not say when or how that would be done.
Despite the fact that John has now been living in the hotel for close to a month, Christine said she was told by the group home manager that she is not allowed to visit him there. She said the manager did not give her a reason for the prohibition on visits. Such a prohibition would appear to be in violation of DDS regulations stating that family members must be permitted to visit departmental clients at all times.
Christine said a new breathing machine has been delivered to John’s hotel room. But she said John told her he doesn’t want to use it because he is afraid there may be insects in it.
On February 14, I emailed DDS Commissioner Jane Ryder and other top DDS officials to ask for a comment on the incident and whether they considered it to be an isolated case. To date, I have not received a response to that query.
DDS turns COFAR’s public records request over to a computer, resulting in an initial processing fee estimate of over $22k
The Department of Developmental Services (DDS) has begun using computers and algorithms to locate and process records in response to our public records requests, and that doesn’t appear to have been a good thing for transparency.
In the latest case, I had asked DDS in January for records listing reasons for the closures of seven state-operated group homes during a two-year period from 2021 through this year.
You would think it would not be difficult for DDS to locate and provide a reasonably reviewable number of documents listing those reasons.
But in a response to my records request, a DDS attorney said the Department had “requested information technology (‘IT’) staff” to search for internal emails, and that the computer search had identified 33,541 such emails and attachments “that may be responsive.”
The DDS records attorney then noted that the Public Records Law allows agencies to charge $25 per hour for staff time in compiling and redacting documents in order to comply with privacy and other laws such as HIPAA.
The attorney stated that because it would take an estimated 837 hours to process the 33,500 emails, the fee for providing them to us would be $22,925. And that fee could go higher if the hourly estimate turned out to be low.
DDS supposed to use its “knowledge of the records”
Arguing that DDS could have located a small number of responsive records, I appealed the DDS response on January 23 to Manza Arthur, the state’s public records supervisor, who heads a division in the office of Secretary of the Commonwealth Bill Galvin. The Public Records Division was established to ensure that state agencies comply with the Public Records Law.
Arthur issued an initial “determination” on February 3 that DDS needed to explain more fully how it had calculated its fee. In addition, the supervisor stated that DDS must “must use its knowledge of the records to facilitate providing any responsive records.”
Arthur didn’t elaborate on what is involved in using knowledge in providing records. But to us, it seems to mean that DDS presumably has personnel who have knowledge of the issues involved, and that those individuals should be able to use that knowledge to find and produce a small number of responsive records.
In that case, there wouldn’t be a need to redact and process thousands of documents that may or may not be responsive to our records request.
A Guide to the Massachusetts Public Records Law published by CommonWealth magazine states, in fact, that a state agency’s “records custodian is required to use his or her ‘superior knowledge’ to determine the exact records that are responsive to (a public records) request.”
The use of such knowledge appears to be what was missing from the Department’s response to my records request. DDS appeared to have simply conducted a computer search for the records using search terms. Anyone can feed search terms into a computer. Institutional knowledge is much different.
DDS says it lacks “capacity,” apparently for a records search based on knowledge
In a phone conversation with the DDS records attorney on February 8, I suggested that instead of conducting a computer search for the records I was seeking, DDS should query departmental personnel with that knowledge of the issue and the records. I also offered to narrow my original request for documents to a period of four months between August and November 2021.
But in a February 17 written response to me, the DDS attorney stated that DDS “does not have the capacity to conduct searches for the documents responsive to your request.” Therefore, he said, DDS had once again requested It staff to conduct a computer search.
This time, the number of “potentially responsive documents” was narrowed to 2,399 emails. The attorney said that using an “algorithm for computing costs…,” DDS had calculated a new fee for producing records of $1,499.38.
While this estimated fee was down from DDS’s original fee estimate of $20,925, the revised estimate is still unacceptable to us. The DDS attorney didn’t elaborate on what he meant by lacking “capacity.” But the end result was the same as the first time. The Department was continuing to feed search terms into a computer.
A test for the state’s Public Records Division
As a result, on February 21, I once again appealed to the supervisor of records.
In my second appeal, I stated that using computers and algorithms to respond to public records requests — which DDS has now done on several occasions — invariably results in a large number of “potentially responsive” documents, which may or may not be truly responsive. Such computer searches also result in inordinately large processing fees for producing the records.
As noted, my narrowed records request concerned seven DDS-run group homes that were closed during the period from August through November 2021.
Does DDS lack such superior knowledge of records concerning those seven homes? Are there no employees within the Department who have an understanding of the reason or reasons that the homes, which the Department managed, were closed in that short period of time?
Is that what the Department means by lacking capacity? If there are no such knowledgeable employees in DDS, the Department should state that to be the case.
In my latest appeal, I asked the public records supervisor to order DDS to more fully explain what it means in saying the Department lacks the capacity to conduct anything other than a computer search for responsive records, and specifically why the Department cannot use its superior knowledge in searching for the requested records.
In our view, this is a potentially important test for the state’s Public Records Division.
Will the public records supervisor require DDS to query its employees about these records, which is something DDS apprently doesn’t want to do? Or will the supervisor find that doing a computer search is sufficient to constitute a use of institutional knowledge?
In that latter case, it would seem that DDS and other agencies would have the green light to turn every public records request entirely over to computer searches.
It’s certainly possible that the supervisor will come up with a different solution to the problem. We expect a determination from the supervisor next week.
UPDATE: DDS says it will hold provider ‘accountable’ for ‘unacceptable’ insect infestation in Waltham group home
A Department of Developmental Services (DDS) official said this week that the Department intends to hold the corporate provider that operates a group home in Waltham “accountable” for a cockroach infestation that has led to the temporary shutdown of the residence.
As we reported on Wednesday, five residents of the group home for persons with intellectual and developmental disabilities were evacuated from the residence last week due to the insect infestation. The residents have been staying at the Marriott Hotel in Woburn since the group home was shut on February 8, according to Christine Davidson, the mother of John Davidson, one of the residents.
The group home is run by WCI, Inc., a provider to DDS. As we reported, Christine has previously raised concerns about what she contends are unhygienic conditions in the residence.
In an email sent on Wednesday afternoon to both Christine and her nephew George Papastrat, who are John’s co-guardians, Jessica Belcher, assistant DDS area director, said she “just wanted to follow up with you about the recent concerns in regard to the cockroach infestation at WCI’s Kendall Park home.”
Belcher stated that, “We agree that this is completely unacceptable and are holding the agency (WCI) accountable to fix the problem and create a plan so that something like this does not happen again.” She didn’t elaborate on what steps DDS is taking to hold WCI accountable.
Belcher aded that, “We understand that this interruption in John’s life is problematic, and we will work collaboratively with you both so that the disruption causes the least amount of stress possible for John.”
Christine said she is glad to receive a message of concern from DDS, but is still having difficulty in getting answers to her questions about situation. She said she has tried for the past two days to reach a top manager at WCI, but he hasn’t called her back. She said she still has not gotten any word as to when the group home will reopen.
Christine also said that among her concerns is that John has not had access for the past week to a breathing machine for treating his sleep apnea. His previous machine was infested by the cockroaches and was reportedly disposed of by the group home.
The email message from Belcher came on Wednesday, a week after the residence was shut down and just hours after our blog post about the matter was published.
In her message, Belcher told Christine and George to “let us know if you feel a meeting between yourselves and DDS is needed at this time.” Christine said she responded by asking Belcher to contact her. She said she hasn’t yet received a response from Belcher.
Belcher also stated in the Wednesday email that DDS “would also like to encourage you to call DPPC (the Disabled Persons Protection Commission) to report any additional concerns that may arise.”
It is unclear whether the group home was ordered shut after an inspection by DDS. The Department conducts licensure inspections of both provider-run and state-run group homes.
I sent an email Tuesday morning to DDS Commissioner Jane Ryder, asking whether the Department had any comment on the shutdown of the home, and whether the shutdown is an isolated incident. Ryder has not yet responded to my message.
We are glad as well that DDS has indicated concern about the situation to Christine and George. But we too would like to see the Department and WCI do more to keep Christine and the other families and guardians of the group home residents informed. There is no excuse for not returning their phone calls.
Waltham group home reportedly temporarily shut down due to insect infestation
Five residents of a group home in Waltham for persons with intellectual and developmental disabilities were evacuated from the residence last week after it was ordered shut down due to an insect infestation, according to the mother of one of the residents.
Christine Davidson, whose son John is a resident of the home, which is run by WCI, Inc., a corporate provider to the Department of Developmental Services (DDS), said her son and the other residents have been temporarily moved into the Marriott Hotel in Woburn. She said it has been difficult to get information about the situation, and no one has told her when the group home will reopen.
Christine has previously raised concerns about what she contends are unhygienic conditions in the residence.
The insects appear to be cockroaches, based on a photo taken by Christine of her son’s BiPAP breathing machine, which appears to have two roaches inside it. Christine said that when John came home to her house over the weekend, she saw bugs in his breathing machine, and said two bugs crawled out of his wheelchair. BiPAP and CPAP machines are used to treat sleep apnea.
A portion of John’s breathing machine, which appears to contain two cockroaches. (Photo taken by Christine Davidson.)
It is unclear whether the group home was ordered shut after an inspection by DDS. The Department conducts licensure inspections of both provider-run and state-run group homes.
I sent an email Tuesday morning to DDS Commissioner Jane Ryder, asking whether the Department had any comment on the shutdown of the home, and whether the shutdown is an isolated incident. Ryder has not yet responded to my message.
Christine said the residents are being fed meals in their rooms in the hotel. She said John has been taken on a daily basis to his day program in Medford since his move to the hotel, but has few other activities while he is in his hotel room.
She said she is concerned her son’s health may be at risk as a result of the infestation. “Right now, he (John) doesn’t have a breathing machine,” she said. “It’s a dangerous situation.” She said the group home took back his contaminated machine.
Christine said she believes John could have picked up a pulmonary infection by using a machine that was infested with roaches. She said she has made several calls to her son’s DDS service coordinator and the coordinator’s supervisor hoping to relay her concerns and get answers to her questions, but no one has called her back.
Christine has previously raised concerns about unsanitary conditions at the Waltham group home, including the allegedly unhygienic state of John’s BiPAP breathing mask. On February 3, 2022, Steven Cohen, a gastroenterologist with Beth Israel Deaconess Medical Center, also stated in a medical progress note that John’s breathing mask at that time was “apparently not hygienic.”
Also last February, Christine sent us photos of potentially unsanitary conditions inside the group home, including a clogged air vent, a dirty bathroom, and what appeared to be insect larvae on John’s clothing in his bedroom dresser drawer. At the time, we were not able to confirm that the objects on his clothing were actually larvae.
Christine said that despite her complaints, the unhygienic conditions in the group home have persisted over the past year. It is unclear why those issues have lingered until they apparently triggered a shutdown of the residence.
We are receiving more frequent reports of a lack of activities and proper care of residents in group homes around the state. These reports appear to stem, at least in part, from an ongoing staffing shortage since the COVID pandemic began.
DDS upholds disenrollment of client from shared living, but appears to leave door open for her to reapply
Department of Developmental Services (DDS) Commissioner Jane Ryder last week upheld the Department’s move last summer to disenroll Mercy Mezzanotti, a DDS client, from shared living services because Mercy has refused to move out of the home of her longtime caregiver, Karen Faiola.
However, in accepting a hearing officer’s 10-page decision in the matter, Ryder appeared to leave the door open for Mercy and Karen to reapply directly to a “qualified provider” agency in order to continue their shared living relationship.
DDS does not directly employ shared living caregivers such as Karen, but funds nonprofit “qualified providers” that do directly contract with them.
In an interview last week, Mercy said DDS officials had repeatedly told her that she would have to leave Karen’s home and find another caregiver in order to continue receiving shared living services. But Johanna Soris, the hearing officer, stated in her decision that it is the responsibility of the qualified provider agency, and not DDS, to determine whether to employ a particular caregiver and whether to accept a client into its program.
Karen Faiola and Mercy Mezzanotti
As we have reported, the previous qualified provider in the case, Venture Community Services, temporarily removed Mercy, against her will, from Karen’s Sutton home last May, and placed Mercy in the home of another person in Worcester whom Mercy had never met. That same day, May 23, Venture terminated Karen’s shared living contract without stating a reason for the termination.
Karen and Mercy maintain that Venture terminated Karen’s contract because the two of them had complained that Venture employees had emotionally abused Mercy.
After objecting to her involuntary move, Mercy was able to return, after two days, to Karen’s home. However, DDS notified Mercy in July that she was no longer eligible for enrollment in the Department’s Home and Community Based Services (HCBS) Intensive Support Waiver Program, which funds shared living services.
Mercy appealed her disenrollment, and a “fair hearing” was held on her appeal on November 10. Soris was appointed as hearing officer in the case by Commissioner Ryder.
DDS argued during the hearing that Mercy became ineligible for the HCBS Waiver program when she came back to live with Karen after her involuntary removal from Karen’s home.
According to DDS’s argument, which was presented in a legal brief in the case, shared living services must be provided by a caregiver who is employed by a qualified provider. The Department maintained that because Karen was no longer under contract with Venture, she could no longer provide shared living services under the HCBS Waiver program. And because Mercy had refused to leave Karen, DDS argued that Mercy herself was no longer eligible for the program.
DDS said to have no role in hiring shared living caregivers
Karen, who has continued to care for Mercy in her home, said she contacted a new qualified provider agency, but was told by that agency that DDS would have to refer her to them in order for her to continue to provide shared living services. She said DDS has refused to provide such a referral. As a result, she has not been paid for providing services to Mercy since May.
In her decision, Soris, the hearing officer, asserted that DDS has no authority under the Waiver program to refer Karen to another qualified provider because DDS does not contract directly with caregivers. According to the decision, the shared living process requires both Mercy and Karen to apply directly to qualified providers to participate as a client and caregiver respectively.
In our view, Soris’s decision, while upholding Mercy’s disenrollment from the Waiver program, implies that both Mercy and Karen could apply to any qualified provider of their choosing and ask that they be allowed to remain together. Karen said last week that she and Mercy plan to do that.
Soris’s decision added that, “The Appellant (Mercy) is still entitled to Waiver services so long as she fills out the proper paperwork and works with a DDS service coordinator to find a Qualified Provider.” In our view, it isn’t clear, based on Soris’s other findings, why Mercy would even need to work with a DDS service coordinator in that regard. Soris appears to have concluded that DDS plays no role in the shared living application process, either with regard to the client or the caregiver.
Hearing officer notes that Mercy benefited from Karen’s care
In her decision, Soris’s acknowledged that Mercy had “thrived” under Karen’s care. And her decision provided details that appear to cooroborate Karen and Mercy’s claim that Venture terminated Karen’s contract after Karen and Mercy had both complained that Venture employees had emotionally abused Mercy.
Soris noted that prior to living with Karen, Mercy had lived in four different shared living homes “that were each unsatisfactory in different ways.”
Citing the testimony of both Mercy and of her therapist, Grishelda Hogan, Soris wrote that Mercy originally “came to Karen Faiola’s home as a shy, timid person who could not effectively advocate for herself. Over the course of the four years with Karen Faiola, (Mercy) made great strides in overcoming her shyness and gaining self-confidence,” Soris added.
Soris also noted testimony from both Mercy and her therapist that that Mercy was having “difficulties” with her job coach, who was a Venture employee, and that Karen had asked Venture management on numerous occasions to have the job coach replaced. Mercy maintained that the job coach was emotionally abusive toward her.
Soris then stated that on May 19, Venture convened a Zoom meeting in which Karen “was informed she should resign and Venture employees would be removing (Mercy from Karen’s) home on May 23.” No reason was noted in Soris’s decision for Venture’s decision to terminate Karen.
Mercy told staying with Karen was “not an option”
On May 20, Soris wrote, a behavioral counselor from Venture picked Mercy up at her work place and “instructed her to pack her belongings over the weekend because Venture was taking her to a new home for a new start.” Soris added that Mercy “didn’t know why she couldn’t continue living with Karen Faiola. (The Venture behavioral counselor) told her it was not an option. (Mercy) was crying and stunned at this information.”
Then on Monday, May 23, Soris stated, the Venture job coach picked Mercy up at her work place and dropped her off at the new shared living caregiver’s home. Mercy then spent two days there.
“During that time,” Soris stated, Mercy “phoned and texted Karen Faiola and Grishelda Hogan exhibiting great distress to the point that both women (Karen and Hogan) filed complaints with DPPC (the Disabled Persons Protection Commission) alleging that (Mercy) was experiencing great emotional distress.”
On May 25, after having spent two nights at the new shared living caregiver’s home, Mercy called Karen “and asked her to bring her home,” Soris stated. “Karen Faiola did so and described (Mercy) as a ‘happy camper’ (in returning to her home.)”
As noted, we asked DPPC last fall to undertake a full investigation of the allegations of emotional abuse by the job coach and of Mercy’s involuntary removal from Karen’s home. DPPC has not responded to our request.
DPPC apparently referred the complaints filed by Karen and Hogan to DDS. A September 30 Complaint Resolution letter written by DDS Area Director Denise Healy did not assess whether the alleged actions of the Venture employees were appropriate, or indicate that the allegations of emotional abuse had been investigated.
We are hoping for a happy outcome to this continuing ordeal for both Mercy and Karen. Mercy said the fact that Karen hasn’t been paid since last May to care for her has had a severe financial impact on both of them. “I’m having sleepless nights,” she said. “We could end up homeless.”
Continuing drop in number of residents threatens continued existence of DDS state-run facilities
New data that COFAR has received from the Department of Developmental Services (DDS) shows the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2022.
The data, which was provided by DDS last week under a Public Records Law request, shows that as of Fiscal Year 2022, the census at the Wrentham Center was 182, down from a high of 323 in Fiscal 2013 — a 44% drop. The census at Hogan was down to 95 in 2022, from a high of 159 in 2011. That is a drop of 40%.
Previous data from DDS showed that the total census in the state-operated group homes declined from a high of 1,206 in Fiscal 2015, to 1,097 in 2021 — a 9% drop.
Meanwhile, the census in the state’s much larger network of privatized group homes has continued to climb, rising from 6,677 to 8,290 between 2008 and 2021 — a 24% increase. (See the graphs below.)
Hogan now has well under 100 residents remaining, and Wrentham is well under 200. Since August 2021, DDS has closed seven state-operated group homes and subsequently reopened one.
But more troubling than those closures is the fact that DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. Last fall, we wrote about a rare admission to the Wrentham Center, but that appears to have been the exception. We have heard from several people who have been unsuccessful in seeking placements for their loved ones in either ICFs or state-operated group homes.
That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICF’s, in particular, will eventually be closed.
Source: DDS
DDS says it has no records on plans to close Wrentham or Hogan
Despite the continuing downward trend in the census at Wrentham and Hogan, DDS said in response last week to our Public Records request that they have no records concerning projections or plans to close those facilities. We have appealed that response to the state supervisor of public records, arguing that the Department did not indicate that it had done a search for such internal plans or projections.
Given the declining census at both Hogan and Wrentham, we believe it is unlikely that there are no departmental emails or other records at least discussing the possibility that these facilities will eventually close.
ICFs and state-operated group homes are vital backstops for care
State-run residential facilities are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.
The ever-expanding network of group homes in Massachusetts that are run by corporate providers that contract with DDS have become bottom-line operations that meet minimal standards for direct-care pay and training. Abuse and neglect are rampant problems in the group home system. Meanwhile, the executives running these provider organizations have seen their salaries skyrocket in recent years.
As funding for the ICFs and state-operated group homes has declined or remained stagnant respectively over the past decade, funding for the corporate-run group home system has grown steadily to over $1.4 billion today.
Allowing the state-run network of care in Massachusetts to wither and die through underfunding and attrition will lead to a catastrophic decline in the level of care and services for some of our most vulnerable residents.
Seven years after the closure of his sheltered workshop, Mark Garrity is still waiting for something to replace it
It has always been his work that has motivated Mark Garrity, his sister Patty says.
When he participated in his sheltered workshop, Mark was productive and social. He derived meaning from the tasks he was given, and he had fun with his friends.
Mark, 52, who has an intellectual disability, doesn’t need or care about being paid a minimum wage for it, Patty says. What is important to him is completing an assigned task.
“If Mark sees a pen without a cap, he’ll put it on with a twist and be proud of it,” Patty says.
But since 2016, when all remaining sheltered workshops were closed in Massachusetts, Mark has faced a void as far as work is concerned.
Mark Garrity (lower right) at a fundraiser for Road to Responsibility with his mother Helen (lower left). In upper row is Mark’s sister Marybeth Garrity (left), his sister Patty Garrity, and John Gregory, a staff member at the time in Mark’s group home.
Mark’s community-based day program is run by the Road to Responsibility (RTR), a provider to the Department of Developmental Services (DDS). The day program offers a cooking class in the kitchen, but that doesn’t interest Mark.
“He just stays in one room where he eats lunch,” Patty says. “When they took away his workshop, they took away his meaning. He’s not like you and me.”
Can’t function in the community
In his sheltered workshop, Mark packaged and assembled things such as car door locks. He took pride in that work.
The purpose in closing the workshops, according to the successive administrations of then Governors Deval Patrick and Charlie Baker, was to place people with intellectual and developmental disabilities in mainstream or integrated work settings that pay at least minimum wage. But Patty says that approach doesn’t work for Mark.
“He can’t produce at the minimum wage level,” she said. And now with the minimum wage in Massachusetts having risen to $15 an hour, she says, it would be even more difficult to find a suitable job for Mark in the community.
Moreover, if Mark were to go off-site and into the community to work, he would need 1-to-1 staffing assistance, Patty said. His day program doesn’t have sufficient staffing for that.
A few years ago, Patty proposed to Mark’s day program staff that the clients be given objects to pack into gift bags that the clients could then deliver to homeless shelters. She said she was told, though, that the program didn’t have the funds to purchase the gift bag items.
“Now his work is long gone,” she said, “and we continue to wait, and nothing is showing up.”
Federal and state lawmakers need to be informed about the value of work activities
We need to let our state legislators and members of Congress know about the lack of meaningful work activities in day programs, which is not unique to Mark’s program.
In the just-ended session of Congress, every member of the Massachusetts delegation, with the exception of U.S. Rep. Richard Neal, co-sponsored legislation (H.R. 603 and S.53), which would eliminate remaining sheltered workshops throughout the country and require that all clients be paid minimum wages in “integrated” work settings. Fortunately, the bills were not approved in that session, but the legislation will no doubt be reintroduced.
You can find your members of Congress here and state legislators here. Please let them know that if they support the elimination of sheltered workshops, they need to find ways to replace the work the shelters provided, particularly for those persons who can’t function in the community.
Sheltered workshop closures left thousands with little to do
All sheltered workshop programs were closed in Massachusetts as of 2016 after the federal Department of Justice had stated two years earlier that developmentally disabled people should work in integrated employment settings in which a majority of the workers are not disabled.
But while sheltered workshops have been deemed “segregated” settings because they are offered solely to groups of developmentally disabled persons, many clients and their families and guardians argued that the programs provided fulfilling, skill-building activities and did not preclude community integration.
Ever since the closures of the workshops, thousands of DDS clients have been transferred to day programs with little or nothing to replace the work opportunities they previously had.
For a potentially significant number of DDS clients such as Mark, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.
Neurologist said sheltered workshop was important for Mark
While Mark has had an intellectual disability since birth, his cognitive functioning was further impaired when he suffered a traumatic brain injury after being hit by a car in 1995. In a letter written before Mark’s sheltered workshop program was ended, his neurologist, Dr. Douglas Katz, a member of the Department of Neurology at Boston Medical Center, stated in that Mark began a long course of rehabilitation after the accident, and that his sheltered workshop activities were an important part of that rehabilitation effort.
Katz added that, “I understand this (sheltered workshop program is …likely to close… I think this would be a big loss for my patient Mark. I would support efforts to maintain this structured workshop for Mark and others that benefit from this service.”
Day program found a partial solution
In some cases, day programs have tried to find ad hoc solutions to the lack of available work activities. After COFAR contacted DDS about Mark’s situation in early 2017, RTR staff found a paper shredding activity for Mark to do at the day program site. The activity received verbal approval from the DDS southeast regional director, who determined that it was in compliance with federal regulations.
The paper shredding seemed at first to be a good solution for Mark. But Patty said that Mark soon sensed a lack of structure and purpose in the activity and became bored with it.
In 2016, we first urged state legislators to recognize that like Mark, not every DDS client is capable of or desires to participate in the mainstream workforce.
In 2019, we asked those lawmakers to support H.88, a bill which would have required that meaningful work activities be provided in DDS community-based day programs. But the language in the bill was subsequently removed by the Children, Families, and Persons with Deisabilities Committee and replaced with language establishing a Permanent Commission on the Status of Persons with Disabilities.
Day program staffing shortages have made problems worse
Day programs around the state are currently struggling with staffing shortages, which have made it even more difficult for them to provide meaningful activities to clients.
Mark’s day program is no exception. Mark, who stayed home from the program during the height of the COVID pandemic in 2020, is now back attending the program only one day per week due to the insufficient staffing.
Mark is still doing the paper shredding activity there, Patty says. But for most of the four-hours he spends at the day program site, “he’s mostly a spectator,” she said.
Patty herself takes Mark out of his group home on Mondays for coffee and errands. On Tuesdays and Thursdays, she takes him to the YMCA where he works with a personal trainer. On Wednesdays, after his day program ends, Patty takes him to a weekly bowling program. And on Fridays, Saturdays, and Sundays, she takes him out for coffee and to visit friends.
“As far as the community goes, Mark has a very balanced life,” she said. “It’s his work piece that is missing.”
Patty is planning to introduce Mark to her local legislators. She thinks that may help them to understand “what Mark can and cannot do.”
“I sometimes feel defeated,” Patty said, “I but will never give up the fight for Mark. “He’s capable of so much more, but the system needs to respond.”
Update: Problematic SDM bill dies at end of legislative session
A problematic bill that would have authorized Supported Decision Making (SDM) as a substitute for guardianships of persons with intellectual and developmental disabilities (I/DD), died at the end of the just-completed two-year session of the state Legislature on Tuesday.
The bill (S. 3132) had passed the Senate in November and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to a remaining “informal” session of the House where it could have been approved on a voice vote, without debate.
As we noted in our previous post, the bill lacked provisions to protect the rights of persons with I/DD and their families and guardians. Last month, we urged the staff of the Ways and Means Committee not to send the bill to the House for final passage.
The bill, which would replace guardianship of individuals with informal teams of “supporters,” will most likely be reintroduced in the new two-year legislative session, which began yesterday (Wednesday). Unfortunately, our guess is that the proponents of SDM will file the same piece of legislation that they have filed several times previously without including our suggestions to improve the bill.
Under the bill, SDM “supporters” would help individuals with I/DD make key life decisions, including decisions about their care and finances. Most people with I/DD currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.
In our view, however, a key piece missing from the SDM legislation so far has been a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.
The SDM legislation assigns the role of the “decision maker” to the person with I/DD. The SDM bills submitted each legislative term thus far have drawn no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD. As a result, we think the legislation presents a potential for financial exploitation of persons with I/DD.
In that regard, we pointed out to the committee that the bill needed a provision prohibiting providers from being involved as SDM “supporters” in helping individuals make “decisions” about services the providers offer.
As we noted, we think SDM is a concept that needs to go back to the drawing board. We would be happy to work this time around with legislators and SDM supporters in drafting a bill that contains the safeguards we’ve noted here and in our previous post.
SDM bill close to passage in Legislature, yet still lacks safeguards to protect individual and family rights
Legislation to establish Supported Decision Making (SDM) for persons with intellectual and developmental disabilities (I/DD) in Massachusetts has gotten close to final passage in the state Legislature.
But, as we’ve said about similar bills in the past, the current bill (S. 3132) lacks safeguards to protect the rights of individuals in the Department of Developmental Services (DDS) system and the rights of their family members and guardians.
The bill, which would replace guardianship of individuals with informal teams of “supporters,” passed the Senate in November, and is now in the House Ways and Means Committee. We have urged key legislators not to pass this bill during the remaining “informal” House session in which the bill would not even require debate or a recorded vote by individual members.
Under the legislation, the SDM supporters would help individuals with intellectual and developmental disabilities (I/DD) make key life decisions, including decisions about their care and finances. Most people with I/DD are currently under guardianship. But SDM proponents maintain that guardianship unduly restricts their right to make those decisions.
In our view, however, the bill continues to lack safeguards to protect individuals with I/DD from potential financial exploitation, and to prevent the marginalization of their family members in SDM arrangements. A key piece missing from the bill is a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.
We recently informed the House Ways and Means staff that a Syracuse Law Review article published earlier this year about SDM pilot projects in Massachusetts identifies, or at least implies, a number of problems or difficulties associated with SDM that are not addressed in the bill.
The lead author of the law review article is Cathy Costanzo, executive director of the Center for Public Representation (CPR), a Massachusetts-based nonprofit law firm that is one of SDM’s major supporters. The article is highly supportive of SDM as an alternative or replacement for guardianship. But among the issues or problems with SDM that the article raises or implies are the following:
Lack of a standard for decision-making ability
The law review article is not specific about the levels of I/DD among the SDM pilot project participants. It states that in a CPR-sponsored pilot project in Massachusetts, there were eight participants who “represented a cross-section of people with varying support needs and from a range of demographics.”
The article doesn’t say, however, whether any of these participants were non-verbal, for instance, or whether they were all capable of understanding the decisions they were making under the SDM model. Our concern has to do with the fact that SDM assigns the role of the “decision maker” to the person with I/DD. Neither the article nor S.3132 discuss whether there is a level of ID below which it is not possible for the participant to appreciate or understand the decisions they are supposedly making.
We hope legislators understand that there is a wide range among levels of intellectual disability (ID), and that those levels have different impacts on an individual’s ability to make decisions. For instance, as described by the American Psychiatric Association (APA), persons with severe and profound levels of ID have IQ levels of 35 or below. The average IQ score is 100.
According to the APA, persons with severe ID comprise about 3 to 4% of the total ID population. The APA notes that for those people, “communication skills are very basic,” and “self-care activities require daily assistance.”
Profound ID applies to 1 to 2% of the ID population who have IQs below 20. Those persons are “dependent upon others for all aspects of daily care, and “communication skills are quite limited.”
For people in those categories, we think the potential for informed decision making about key life decisions, even with support from others, is very low if not non-existent. Yet, S. 3132 makes no allowance for that. The bill draws no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD.
As a Penn State Law Review article about SDM states:
…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes.
Given the diminished decision making capacity among persons with severe and profound levels of ID, we think those people are especially vulnerable to financial exploitation from persons on their support teams who may “help” them make financial decisions that don’t reflect their wishes. See our discussion below about the potential conflict of interest faced by support team members who are also employees of corporate providers that provide services to the disabled individuals.
In these situations, family members of persons with I/DD, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who stand to benefit financially from the clients’ “decisions.”
We think there is a greater potential for SDM to work effectively for people with what the APA describes as mild levels of ID. Mild ID, which comprises an IQ range of 50 to 70, includes about 85 percent of people with intellectual disabilities.
According to the APA, people with mild ID “are mostly self-sufficient with sufficient supports.” Those supports, the APA says, “might include assistance with life decisions.” So, it makes sense to assume that people with mild ID are capable of participating in a team discussion that would result in a decision of that magnitude.
A potentially more problematic group in terms of decision making ability are those persons with what the APA labels as moderate intellectual disability. People in this group, who have IQs ranging from 36 to 49, comprise about 10% of the ID population.
According to the APA, people with moderate ID need support for making “social decisions (particularly romantic decisions).” Independent living may be achieved for this group “with moderate supports such as those available in group homes.”
Once again, S. 3132 doesn’t make distinctions between any of these levels of ID. The bill assumes that all persons with I/DD, no matter how low their level of cognition is, are capable of making complex life decisions.
Conflicts of interest in SDM support teams
As previously noted, members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide. The Syracuse Law Review article states that in the Massachusetts pilot project:
…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).
There is, however, no such restriction in S.3132 against providers being involved in decision-making regarding services they provide. We think the SDM legislation needs such a provision.
Need for public funding
The Syracuse Law Review article stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”
There is no reference in S.3132, however, to a potential funding mechanism for SDM in Massachusetts. At the same time, the law review article states that providing public funding for SDM could introduce other problems into the model by turning it into a paid service.
Lack of a dispute resolution process
The Syracuse Law Review article recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.” While S.3132 requires EOHHS to establish an SDM training program in Massachusetts, it doesn’t specify that the program should include training in dispute resolution.
In our experience, many disputes in the care of persons with I/DD occur between family members or guardians, on one hand, and DDS and providers, on the other. In other words, DDS tends to support the providers’ positions in these matters, and family members and guardians are often left in an isolated position. What may be needed is an independent mediation process for disputes that places family members on a level playing field with the other parties when disputes arise.
It’s interesting that many of our major concerns about SDM are either discussed or implied in the Syracuse Law Review article, which was written by major SDM proponents. The Legislature has yet to come up with a bill that addresses these problems. SDM is a concept that needs to go back to the drawing board in the coming legislative session.
COFAR blog 