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DDS placing client in a ‘Catch-22’ position to force her to leave her shared living caregiver
The Department of Developmental Services is arguing in a legal brief that Mercy Mezzanotti, a departmental client, should be disenrolled from a program that provides her with shared living services unless she agrees to move away from her long-time caregiver, Karen Faiola.
But Mercy maintains that she wants to stay with Karen with whom she and her therapist say she has thrived emotionally over the past four years.
In May, Karen’s previous payment agency, Venture Community Services, suddenly canceled her shared living contract without stating a reason in its termination notice. As a result of the contract termination, DDS maintains in the legal brief that Karen is no longer a “qualified shared living provider.”
The DDS brief further argues that because Mercy has refused to move in with a new caregiver, she has “voluntarily declined” shared living services and should be disenrolled from the program.
For reasons that DDS has not revealed publicly, the Department has declined to refer Karen to a new shared living payment agency. DDS does not contract directly with shared living caregivers, but does refer them to shared living payment agencies such as Venture. Were DDS to refer Karen to a new agency, Karen would presumably become a qualfied caregiver once again.
Karen Faiola and Mercy Mezzanotti
Karen and Mercy both maintain that Karen’s contract was terminated after both of them accused Venture employees of emotionally abusing Mercy. They claim DDS is siding with Venture in the matter, and that the Department has refused to fully investigate their charges.
Because DDS has declined to refer Karen to a new corporate payment agency, Karen has not been paid since May for caring for Mercy even though Mercy has continued to reside in her home. In Karen’s and Mercy’s view, DDS’s legal argument has placed both of them in impossible, Catch-22 positions in order to deny what Mercy has expressly stated what she wants – services from Karen.
Mercy’s appeal of DDS’s disenrollment notice is now before a state hearing officer who held a hearing on it last month. By way of disclosure, I attended the November 10 hearing via Zoom and testified in support of Mercy and Karen. I agreed, at the request of hearing officer and Erin Brown, a DDS assistant general counsel, not to publish details of the actual hearing on this blogsite until the hearing officer renders her decision, which is expected sometime later this month.
As a result of that agreement, I am confining this post to a discussion of the legal brief filed by Brown with the hearing officer on December 7, after the hearing concluded. In her brief, Brown laid out the Department’s argument for disenrolling Mercy from services under the Home and Community Based Services (HCBS) federal waiver program.
In May, as we also reported, Venture employees removed Mercy, against her will, from Karen’s home and placed her for two days in the home of another caregiver whom she didn’t know. After objecting to the move, Mercy was able to return to Karen’s home. We have joined Mercy and Karen in asking the Disabled Persons Protection Commission (DPPC) to fully investigate both the removal of Mercy from Karen’s home and allegations made by Mercy that she had been previously emotionally abused by Venture employees.
Catch-22 positions for Mercy and Karen
The key point Brown makes in her brief is that Mercy became ineligible for the HCBS Waiver, which supports shared living, when Mercy came back to live with Karen after her involuntary removal from Karen’s home. Brown’s brief stated that Mercy:
…voluntarily declined shared living supports from a Qualified Provider, and instead choose to live with Ms. Faiola (Karen). This choice, which is her right, resulted in (Mercy) being ineligible for the (HCBS) Waiver because she was not receiving a Waiver program service: Ms. Faiola is not a qualified and licensed provider, nor is Ms. Faiola employed by a Qualified Provider to provide Waiver services.” (my emphasis)
However, as noted above, the reason Karen is not employed by a Qualified Provider is that Venture terminated her contract without stating a cause, and DDS will not refer her to a new Qualified Provider.
Also, while Brown stated that Karen herself is not a licensed or qualified shared living provider, Brown later stated in the same brief that in this case, the licensed and qualified provider was Venture, a DDS-funded corporate agency, that contracts directly with shared living caregivers. Shared living caregivers themselves, such as Karen, are not licensed by DDS.
DDS says psychotherapist’s testimony that Mercy has reportedly thrived under Karen’s care was irrelevant
In her brief, Brown acknowledged that Grishelda Hogan, an outpatient psychotherapist, who has treated Mercy since 2018, testified during the hearing that she has “not had any concerns about (Mercy) in the care of Ms. Faiola.”
As we reported, Hogan actually sent a written statement to the hearing officer prior to the hearing in which she stated that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“
Brown stated in her brief, however, that “the entirety of Ms. Hogan’s testimony was irrelevant. She did not testify about the (HCBS) Waiver or Waiver rules. There were no clinical matters at issue in the fair hearing, nor was Ms. Hogan qualified as an expert to speak on clinical matters.”
It appears that Brown is admitting in her brief that Mercy’s emotional state, and her wishes, are irrelevant to DDS. Also, Hogan is a psychotherapist who has worked with Mercy for four years. Brown’s brief offers no reason why she would not be qualified to speak on clinical matters.
Brown similarly contended in her brief that testimony by Mercy’s sister Tami Baxter that Mercy was doing well in Karen’s care was irrelevant. And Brown maintained that Karen’s testimony that DDS has refused to refer her to another qualified provider was “outside the scope of the fair hearing and irrelevant.”
In our view, Karen’s employment relationship with Venture is of central relevance to the case. Venture’s termination of the contract with Karen is the basis of DDS’s argument that Mercy is not receiving services from a Qualified Provider.
As I noted in a written statement that I sent on November 17 to the hearing officer, Mercy had been in several shared living arrangements before she met Karen that were not successful and that left her in a depressed and dysfunctional emotional state. We think placing Mercy with a different shared living provider than Karen would risk a return to the unsuccessful placements of the past for her and would risk undoing the emotional and psychological progress she has made with Karen. Those are risks that we think may be quite high.
We are urging the hearing officer to decide in favor of Mercy Mezzanotti’s appeal to retain her eligibility for services from DDS.
We are also requesting that the hearing officer either order or advise DDS to refer Karen to a new payment agency in order to allow Mercy to continue to receive shared living services from her.
Mother says daughter’s health has declined at day program where she has few meaningful activities
At her day program in the Liberty Tree Mall in Danvers, Mia Cappuccio spends lots of time either walking around the mall with other clients, isolated from the community, or engaging in computer games and a handful of other repetitive and mundane activities, according to her mother Jeanne.
Jeanne said Mia has told her she has asked many times to participate in job training and internships at Parcels, a boutique in the mall. Parcels is run by the Northeast Arc, a corporate provider to the Department of Developmental Services (DDS). Northeast Arc runs both Mia’s day program and her group home.
According to Jeanne, Mia says the day program director repeatedly responds to her requests to work at Parcels by saying she will “‘look into it,'” but nothing ever comes of it.
Since Mia began attending the day program in October 2021, the staff have allowed her, over Jeanne’s objections, to buy candy and lemonade at the Five Below store there. Jeanne thinks the combination of Mia’s sugar intake and lack of exercise at the day program may have contributed to her development of diabetes, which was diagnosed in October.
Yet, Jeanne says, neither Northeast Arc nor DDS, which funds the provider agency, appear to recognize the problem.
Jeanne said she has requested that the day program staff help Mia to make better food choices, and provide Mia with activities other than making purchases in mall stores. But, she said, the day program management have responded that while they encourage Mia to make good choices, it is Mia’s “human right” to buy what she wants.
Jeanne said the day program management suggested that the solution to the problem is to take Mia’s debit card away from her or to suspend her participation in the program altogether. Jeanne maintains that neither of those suggestions are constructive because neither would provide Mia with cues for appropriate behaviors or with usable skills.
Mia and Jeanne Cappuccio
Mia’s day program is called STEP ( Skills Training Exploration Program), and is described on the Northeast Arc website as helping participants “build work and life skills.” But, Jeanne said, little or no such skill-or-work-related training is being provided to Mia in the program.
Mia, who is 26, has a moderate intellectual disability. She has lived in three group homes run by three different DDS providers; but Jeanne said that none of those settings have met her needs as required by DDS regulations.
We are hearing more and more from families and guardians that the COVID pandemic hastened a decline in overall care and services in the DDS community-based system. The decline has been marked by an ongoing staffing shortage. But Jeanne maintains the staffing shortage doesn’t fully explain the lack of meaningful activities provided by Mia’s day program.
Jeanne said Northeast Arc frequently extols its programs on social media and in podcasts. Recently, a Northeast Arc executive contended on a corporate podcast that the organization has helped more people with disabilities secure employment during the pandemic than in any previous year. “As I listen or read these things, I wonder – who does this apply to? Why isn’t this Mia’s reality?” Jeanne wrote to us.
Declining health
Jeanne said Mia’s mental and physical health have declined in the past several months. In addition to diabetes, Mia was diagnosed earlier this year with metabolic syndrome, a condition that can increase the risk of heart disease and stroke. She also developed fatty liver disease a year ago as well as narcolepsy.
Jeanne said Northeast Arc recently developed a behavior plan to address these issues; but she termed the plan “weak,” and said the staff are “woefully undertrained.” Also, she said, the plan has been implemented in Mia’s group home, but not at her day program.
Seeking self-directed model and requesting a change in placement
Earlier this year, Jeanne asked DDS officials whether the Department’s “self-directed services” model might work better for Mia than the traditional model of care under which DDS directly funds corporate providers to provide residential and day program services. Although DDS has been operating self-directed services programs since the late 1990s, the state Legislature authorized a major expansion of those programs in 2014 with passage of the “Real Lives” law.
Jeanne said provider and DDS officials met with her to discuss her self-directed services proposal, and recommended for the first time last month that she explore a shared-living arrangement for Mia. Jeanne said they told her the self-directed model could be made to work with shared-living services.
Jeanne said she and her husband Tom have agreed to explore the shared-living model, although she said Mia has said she would like to remain in a group home. Under the shared-living proposal, Mia would live in a home near her parents. A shared-living setting is run by an individual provider.
Jeanne said she and Tom also asked to explore another group home placement for Mia, particularly one that is state-operated. As we have reported, staff in state-run group homes and Intermediate Care Facilities in Massachusetts are better paid and better trained than their counterparts in the corporate provider-run group home system.
Jeanne said the response from DDS, though, has been that they typically refer only medically complex and highly clinically or behaviorally challenged individuals to state-operated facilities, and that those settings would not be an appropriate peer match for Mia. She added that DDS has also claimed residential placements are scarce, and there are no other residential placements in the Cappuccios’ community.
We disagree that state-operated placements are only appropriate for a restricted set of clients. In any case, it appears that Mia’s medical needs have become more acute in the past year.
Lack of exercise and concern over diet
Jeanne said that in August, when Mia’s gastroenterologist diagnosed Mia with fatty liver disease, he recommended a half-hour-a-day exercise program for her, five days a week, and a low fat diet.
To date, Jeanne said, Mia has no regular exercise program either at her day program or in her group home. She said staff maintain that they encourage Mia to exercise and eat healthy foods, but that they contend she is a picky eater and she refuses exercise.
In September, with Mia’s health issues unaddressed, a sleep specialist at Mass Eye and Ear determined that Mia was experiencing excessive daytime sleepiness and that she might have narcolepsy, Jeanne said. In late October, her primary care doctor stated that Mia’s condition had shifted from prediabetic to diabetic. The doctor’s notes stated that Mia’s group home was working on diet and exercise programs for her; but Jeanne said the group home has not been doing that.
Based on email correspondence between Jeanne and the day program staff, it doesn’t appear the staff have recognized the extent of Mia’s concerns. On November 4, a day program manager emailed Jeanne to say that Mia “has made a lot of progress and is doing really well. Mia has expressed on several occasions that she enjoys being in program and the activities that we provide.”
There was no acknowledgement in the program manager’s email of Mia’s health problems.
Three days later, Jeanne emailed the day program manager to say that medical lab results over the previous year had iindicated that there might be a correlation between Mia’s development of diabetes and her participation in the day program. In that email, Jeanne wrote that:
Mia has been purchasing candy, cookies and a liter of lemonade frequently at her day program. She has been experiencing fatigue and falling asleep often. It has been a vicious, unhealthy cycle. She needs support to manage her health, rather than her social behavior.
That same day, November 7, Jeanne brought the group home and day program situation to the attention of Kelly Lawless, the DDS northeast regional director. She wrote:
Direct care staff members have been quick to respond to correspondence and they appear to have good intentions. However, her programming has not met Mia’s needs and has resulted in a decline in her health and wellness. Her programming has substantially contributed to her development of metabolic syndrome, including diabetes.
Northeast Arc official contends the day program provides activites and exercise
In an email on November 21 to both DDS Commissioner Jane Ryder and to Northeast Arc CEO Jo An Simons, I asked for a response to Jeanne’s concerns about Mia’s day program and her request for a new placement for her.
Timothy Brown, chief innovation and strategy officer at Northeast Arc, responded with an email, stating that Mia had started in a class at her day program called “Health Matters,” and that she had “consistently made healthy eating choices” due to the class, and had not purchased any candy since her diabetes diagnosis.
Brown also contended that Mia has participated in “structured classes and programming that focus on employment goals and is exploring specific internship opportunities that were identified during these classes where she expressed career interests.” He didn’t identify those goals, and didn’t respond to a follow-up email seeking specifics about the internship opportunities and classes.
Brown also maintained that Mia has had “ample opportunities for physical exercise during the day.” He said those activities incude walking “alongside community members each morning prior to the mall opening”; day trip opportunities outside of the mall, and options during inclement wealther for Zumba and aerobics. He also said Mia attends the YMCA at least two times per week with her housemates, and uses an exercise bike on days she chooses not to go to the Y.
Exercise claims disputed
Jeanne, however, said in late November that she determined, based on Mia’s debit card transactions, that Mia has continued to go to pizza and barbeque wings restaurants in the mall at least once a week, and has continued to eat candy and sugary foods. She also said Mia told her that the instructor for the Health Matters class had been out for weeks and was out indefinitely. One of two of the provider’s care staff were taking turns running the class, she said.
Jeanne added that Mia told her the other activities in the day program primarily consist of computer games such as Jeopardy, Wheel of Fortune, and a game she has repeatedly played called Spent. A reviewer described Spent as a “harsh and often bleak” simulation of a situation in which the players are facing poverty and must figure out how to survive for 30 days on their last $1,000. “It is not appropriate or relevant and I don’t think it is intended to be played repetitively,” Jeanne told us.
Jeanne also said that, based on her review of the YMCA records, Mia has been to the Y 34 times in the past 11 months, which averages out to just over three times a month.
I have not received a response from Ryder to my November 21 email seeking her comment on the situation.
In our view, it is cases like this one that indicate whether a state agency such as DDS is effective in its management and oversight of its provider-run programs. When a provider can’t seem to recognize that a client in its care is experiencing severe health problems as a result of the policies and practices of that agency, the evidence begins to mount that the system is broken.
We would join with Jeanne in urging DDS to find a new and successful placement for Mia, preferably in a state-run facility. Given that Mia’s health is declining, DDS can’t afford to let the situation continue any longer.
Father writes about how he and his son finally broke free of the grip of Applied Behavior Analysis
John Summers, a writer with whom we frequently correspond on disability issues, is a Cambridge parent who followed recommendations from doctors to seek Applied Behavior Analysis (ABA) services for his developmentally disabled son Misha.
ABA is the primary form of clinical treatment in Massachusetts and around the country for persons with developmental disabilities, and particularly for children with autism.
But in an essay he wrote for the Ideas section in this coming Sunday’s edition of The Boston Globe, Summers, who is a Research Fellow in History and Disability at New America, gives a compelling and moving account of how ABA failed his son, and how both of them finally broke free of it.
One of Summers’ key criticisms of the ABA system in Massachusetts and other states around the country stems from his finding that no state agency collects data on ABA. “It makes no sense,” he said in an email to us. “They are running a collective experiment on these children and not asking for any results. Given the state’s history with disability, that’s troubling.”
Summers wrote to us that MassHealth’s spending on ABA jumped 200% between 2017 and 2021. MassHealth began funding ABA services in 2017. In Fiscal Year 2021, he said, MassHealth spent $140.5 million on ABA services for 6,227 clients, for an average cost per child of $22,563.
“Yet,’ he wrote, “Massachusetts isn’t trying to find out what escalating public investment in this treatment is achieving, much less what harm it may be doing.”
We would be interested in hearing from our members as to their experiences with ABA for their loved ones in the DDS and special education systems. It’s possible that many clients have been helped by it. Summers says that for Misha, it was a futile ordeal.
Summers had placed his son, who is now 11, in ABA programs from the time Misha was just under two years old. Mishas was steered there, Summers said, by his Early Intervention program. Yet somehow, the years of treatment didn’t seem to be helping him.
ABA school attempted to quash essay
Summers said that Melmark New England, one of the ABA schools that he discusses in his Globe essay, hired Regan Communications, the powerful Boston public relations firm, to try to prevent the Globe from publishing his essay. Ultimately, Melmark was unsuccessful in stopping publication of the article.
“It was a revealing move,” Summers says, “that betrays a lack of compassion behind the smiling corporate face.”
ABA based on the theories of B.F. Skinner
A couple of years ago, Summers writes in his essay, he began doing research on ABA. He found that it stems from the behaviorist school of psychology, which was pioneered in the 1950s and 1960s by B.F.Skinner. Skinner engaged in what Summers describes as a “revolt against the traditional subject matter and methods of psychology.”
Summers notes that under the behaviorism model, “the inner life of motivation and sensation, will and judgment, thought and feeling” are disregarded because they can’t be measured. Those things lack what Skinner described as “the dimensions of physical science.”
As Summers put it, Misha’s behavior analysts “restricted themselves to observing his physical operations, devoid of subjective or personal meaning, so that they could be measured with the same tape, as it were.” In sessions that could last several hours a day, Misha’s behaviors deemed appropriate were rewarded by “reinforcers” such as gold stars. Negative reinforcers such as withholding attention were used for his behaviors that were deemed inappropriate.
But failing by the ABA measuring tapes to make expected progress in an ABA school in Cambridge, Misha was sent to a Melmark school in Andover. According to Summers, “Melmark clamped a vise grip around him.” In an observation room, “behind a one-way mirror, an ‘educational coordinator’ monitored his compliance with ‘appropriate social interactions’ in class.”
Still, none of it worked. The program wasn’t able to teach Misha how to brush his teeth, speak, or read at the level of children his age. Yet, the rigidity of the program’s methods frustrated Misha who engaged in bouts of crying and tearing out his hair there.
Summers had seen enough. In March, he enrolled Misha in the Perkins School for the Blind in Watertown, which agreed to “scrub every trace of ABA from his IEP (Individual Education Plan).” Misha still can’t brush his teeth without help, but he is finally in a program that he enjoys and where he is given the freedom to have what Summers describes as an inner life.
Behaviorism largely debunked
Summers notes in his Globe essay that behaviorism is no longer an influential school in the field of psychology. One of the few areas it is still practiced is in the treatment of persons with developmental disabilities. In those school settings, autistic students are largely segregated from the rest of society.
It’s ironic because states such as Massachusetts, which rely on ABA, nevertheless subscribe to an ideology that congregate care for people with I/DD is universally bad because it segregates them from the wider community. Of course, that ideology leads to all kinds of contradictions, particularly the mistaken assertion that small group home settings are fully integrated into the community.
Private equity takeover of some ABA schools
Summers also told us that his research has revealed that because ABA schools have become so widely supported by government funding, the schools have increasingly become a focus of investment by private equity firms.
Summers said that of the total of 92 ABA schools certified by Early Intervention in Massachusetts, he found that at least five are owned by private equity companies. He said he asked the Massachusetts Department of Public Health (DPH), the lead administrative agency for Massachusetts Early Intervention programs, “whether they were concerned about this, but received no answer.”
Summers said the five ABA schools he found to be owned by private equity firms are Key Autism Services (owned by Cane Investment Partners); Butterfly Effects (Moran Capital Partners); Autism Spectrum Therapies / LEARN Behavioral (Gryphon Investors and PineBridge Investments); Behavioral Healthworks (TA Associates); and Mentor South Bay (Sevita).
As noted, we would welcome your comments about your experiences with ABA.
Baker administration does not appear to have projected the impact of higher state funding on direct-care wages
(COFAR Intern Joseph Sziabowski contributed to the research for this post.)
On July 28, Governor Baker signed the Fiscal Year 2023 state budget, which, among other things, directed for the first time that hundreds of millions of dollars be spent to raise the wages of direct-care staff working for corporate human services providers.
But more than a quarter of the way through the fiscal year, questions remain about the legislation, including the amount by which those wages will be raised.
The budget provision appears to be a big win for thousands of caregivers in the Department of Developmental Services (DDS) system, whose low wages have resulted in staffing shortages that have reached critical levels. Up to that point, the administration and Legislature appeared to have done little to address the staffing crisis.
However, neither DDS nor the Executive Office of Health and Human Services (EOHHS) appear to have projected the level to which the average direct-care wage in Massachusetts will increase due to the budget legislation.
The legislation (line item 1599-6903 of Chapter 126 of the Acts of 2022), specifically requires that any corporate human services provider receiving state funding under a special provider reserve account direct at least 75% of that funding to compensation for direct-care and front-line staff.
The legislation appropriated $230 million for the provider reserve account for Fiscal 2023. The 75% funding provision would appear to require that a total of $173 million in the reserve account be directed by human services providers to boost direct-care wages.
The legislation, however, did not set a target wage for direct-care workers that providers would be expected to pay under the line item funding requirement. The budget line item, in fact, implies that the Legislature does not currently know what the wage distribution is for direct-care workers in Massachusetts.
In our view, it is problematic that despite appropriating hundreds of millions of dollars in funding to the providers, neither the administration nor the Legislature appear to have set a goal as far as wages of the providers’ direct-care workers are concerned.
COFAR has called for a target minimum wage of $25 per hour for those workers. The U.S. Bureau of Labor Statistics (BLS) lists an average direct care wage of $16.80 throughout the country as of May 2021. (The BLS wage category is Social and Human Services Assistants in Residential Intellectual and Developmental Disabilities facilities.)
There is a difference of more than $8 per hour, or nearly 50%, between the average direct care wage in the nation and what COFAR has proposed for workers in Massachusetts. But whether our goal or something considerably less might be achieved by the budget legislation is apparently unknown.
It also isn’t clear that the increased funding will actually find its way to the direct-care workers and will not be diverted to the provider executives. In our October 12 email query to both EOHHS Secretary Marylou Sudders and DDS Commissioner Jane Ryder, we also asked if the administration had issued any guidance to providers regarding the payment of higher direct-care wages, and how the money would be audited and tracked. As noted, we have not received any answers to those questions.
Legislative staffer assumes there is no wage projection
In response to the questions above, which we also posed to the Legislature’s Children, Families, and Persons with Disabilities Committee, a committee staff member said she had been informed by EOHHS that the administration has “set benchmarks from which providers choose to pay their direct-care workers – so pay rate decisions on exceeding those rates are still up to providers for the privatized group homes.” The benchmarks appear to be the BLS average wages noted above.
The legislative staffer added that, “I take this to mean they (the administration) don’t have projections for a raise in wages, whether they will exceed the benchmark rates or not. They will at least have to be at the benchmark rates.”
In other words, the administration appears to be concerned only that current and future rates paid by providers to their direct-care workers in Massachusetts be comparable to the national average rates calculated by the BLS.
Legislature does not know direct-care wage distribution
The Legislature, in fact, does not appear to know what the current wage distribution is for direct-care workers in the state’s human services system.
The Fiscal 2023 budget line item states that EOHHS to provide the Ways and Means committees as of March 3 of next year with a comparison of the median wages earned by direct-care and other workers in Massachusetts with the 75th percentile wage estimate by the BLS.
What that seems to mean is that the Legislature would like to know whether direct-care workers in Massachusetts are in the upper quarter of the BLS wage range in the country. That still would not require EOHHS to project the likely impact of the requirement in the Fiscal 2023 budget that the providers spend 75% of their reserve fund revenues on raising those wages in Massachusetts.
Baker takes credit for increased funding to providers
On October 3, Governor Baker “touted” increases in funding his administration has provided to the corporate human services providers — more than $800 million since 2015, according to The State House News Service. But in his remarks to the Massachusetts Providers’ Council, Baker apparently didn’t address the potential impact of the increases on direct-care wages.
In the same article, the News Service noted that, “The human services sector has struggled for years to attract and retain workers due to the combination of lackluster pay and the difficult nature of the work.”
The article didn’t question why a nearly billion-dollar increase in provider rates would not substantially raise the “lackluster pay” to the providers’ workers.
As we reported in August, much of that money appears to have gone to the providers’ executives. Between Fiscal Years 2012 and 2020, total compensation of CEOs, executive directors, and other DDS provider executives doing business in Massachusetts rose from $102.4 million to $125.5 million. That was a 23% increase.
Also, the average compensation paid per executive rose in that period from approximately $161,000 to $184,000 — a 14% increase.
As we have previously reported, both the state auditor and inspector general have found that increased state funding to the providers hasn’t necessarily translated into higher direct-care wages.
We are hopeful that this year will mark a meaningful increase in direct-care worker pay. But thus far, there has been no information as to what the actual impact of the increased funding will be on those wages.
Mother says ‘no’ to DDS offer to drop effort to remove her as son’s co-guardian if she relinquishes all decision making authority
The Department of Developmental Services has offered to drop a two-year-long effort in probate court to remove Cindy Alemesis as co-guardian of her son Nick, whose life she saved in 2018.
But Cindy said that as part of a proposal made last week to settle the case, the Department stated that all medical and residential decision making authority concerning her son would be given to a new DDS-paid co-guardian.
In an interview, Cindy said she is encouraged that the Department is at least now open to her remaining as Nick’s co-guardian. However, she said, she will not accept an arrangement under which she would lose all medical and residential decision making authority in Nick’s care.
“I’m not handing that to them,” Cindy said. “I’ve fought for proper care for Nick and for his rights for his entire life.”
Nick and Cindy Alemesis
In 2018, Nick nearly died after staff in his group home in Dracut failed to take him for a scheduled ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.
A few hours later, Cindy was the first to notice that Nick was ill, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that Nick had developed sepsis from it.
Nick spent eight months at Mass. General Hospital, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.
Despite Cindy’s actions in 2018, DDS petitioned the Middlesex County Probate Court for unspecified reasons in October 2020 to remove Cindy as Nick’s co-guardian.
Co-guardianship could still be “suspended” for vague reasons
The new DDS proposal last week to drop the effort to remove Cindy’s co-guardianship also includes a condition that her co-guardianship could still be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.” The proposal doesn’t explain who would make that determination or how it would be made.
The proposal further states that the DDS co-guardian would have to agree to “the dissemination of protected health information or other personal information about (Nick) with third parties uninvolved with (his) medical care.”
That condition sounds like an effort to prevent Cindy from providing information about Nick’s care or services to an organization such as COFAR. Presumably, if an incident such as a leaking shunt were to happen again to Nick, Cindy would be prohibited, under DDS’s proposed agreement, from saying anything publicly about the matter unless the DDS co-guardian were to allow it.
Cindy alleges poor care and decision making by DDS and provider
Cindy maintained that since Nick’s 2018 hospitalization, DDS and Nick’s residential provider, Incompass Human Services, continued to make poor decisions in providing medical care and services to him. She noted that DDS recently sent Nick back to a day program operated by Incompass, causing Nick to act aggressively and apparently injure himself.
Cindy said that in recent months, Nick was repeatedly injured in the group home, and was afraid of the staff there. The same thing then happened in the day program, she said, because many of the staff were the same.
Following those repeated injuries, Nick was moved out of the group home in September, and is currently living in a respite facility in Saugus.
Cindy said Nick’s former DDS-paid co-guardan, who had imposed a temporary ban this summer on Cindy’s visits and phone contact with Nick, has resigned. But Cindy said she isn’t hopeful the situation will improve with the appointment of a new DDS co-guardian.
The new DDS co-guardianship proposal contains the following stipulations:
- Eva Toscano, who appears to be a program manager with the Department of Mental Health, would be appointed Nick’s new DDS-paid co-guardian. Toscano would have sole medical and residential decision making authority regarding Nick’s care.
- Cindy would be informed beforehand of Toscano’s residential decisions “when feasible,” and would be informed beforehand of Toscano’s medical decisions unless there was an emergency.
It would appear that under this stipulaton, Nick could be moved from one residence to another without Cindy being informed in advance. In all cases, he could be moved without her consent.
- Cindy would have to give 48 hours notice to residential staff prior to visiting her son.
- Cindy would be allowed phone calls with Nick, but only if it were determined to be “not detrimental to (Nick’s) behavior.”
The proposal doesn’t specify who would make that determination as to whether the phone calls were detrimental, but it would appear to be up to the DDS co-guardian. Cindy says Nick has acted out in the past because he objects to a rule cutting off his conversations after 10 minutes.
- Cindy could continue to take Nick to his church, which he has attended for the past 25 years, but the DDS co-guardian could cut off the visits if she decided they were “detrimental to (Nick’s) behavior or health.”
Cindy would not be allowed to make that determination whether attending church was detrimental to Nick.
Both Cindy and Nick’s pastor, the Reverend Keith Phemister, have stated that Nick has never caused problems in his church. Yet Cindy said Nick has been restricted for months by DDS and by providers from attending church services and functions, even online.
In an interview in April, Phemister sad Nick had not been able to attend the church for the past month. “I know he looks forward to coming to church,” he said. It’s his lifeline.”
- Cindy’s co-guardianship could be “suspended” if she was found to be “unwilling to make (Nick’s) health and welfare the ultimate goal of (her) co-guardianship.”
It seems to us that stipulating that a guardian can no longer make residential or medical decisions or give out medical information about their ward essentially amounts to removing their guardianship. At the very least, DDS’s proposed resolution of this case would ensure continuing disputes between Cindy and the DDS co-guardian. We fully understand why Cindy does not want to accept a proposal like that.
In November 2021, Dr. Zaheer Ahmed, Nick’s primary care physician, wrote a letter to the probate court, opposing DDS’s bid to remove Cindy as Nick’s co-guardian. In his letter, Ahmed maintained that Cindy had always acted in Nick’s best interest.
We agree with Dr. Ahmed, and believe Cindy should keep her medical and residential decision making authority.
COFAR asks for full investigation of removal of a client against her will from her shared-living home
COFAR has asked a state agency to undertake a full investigation of the removal in May of a client of the Department of Developmental Services (DDS) from the home of a woman from whom she was receiving shared-living services.
The DDS client, Mercy Mezzanotti, said she was taken, against her will, from the home of Karen Faiola, on May 23 by an employee of Venture Community Services, a nonprofit contractor to DDS. Mercy and Karen allege the employee showed up at Karen’s home in Sutton and drove Mercy to the home of a family in Worcester whom Mercy didn’t know.
Mercy said she was kept in the Worcester residence for two days before Karen was able to locate her and return her to her home. She contends the experience caused her acute emotional distress. “I thought I would never see my home and Karen and my two cats that I love again,” she said.
Karen Faiola (left) and Mercy Mezzanotti
Mercy, 47, has a mild intellectual disability. But while she attended special needs classes in high school, her verbal skills were good enough for her to attend mainstream high school classes in English and to make the honor roll.
As her own guardian, Mercy has full legal authority to decide where to live, as well as to make other major life decisions.
In an email sent yesterday (October 17) to Nancy Alterio, executive director of the Disabled Persons Protection Commission (DPPC), we noted that an “Administrative Review” undertaken by DDS of the incident did not result in any findings about the appropriateness of Mercy’s removal from Karen’s home.
That incident and two other allegations of intimidation of Mercy were reported to DDS on May 26 by Karen, with whom Mercy has continued to live.
Under state regulations, DDS is required to report allegations of abuse to the DPPC, an independent state agency created to investigate “serious physical or emotional injuries” alleged to have been caused by caregivers to adults with disabilities in Massachusetts. However, due to a lack of resources, the DPPC refers the vast majority of abuse allegations it receives to DDS to investigate.
Both Mercy and Karen say they were not interviewed as part of the DDS review of Karen’s complaint.
Therapist corroborated claims of emotional injury
In a July 21 email to Mercy and Karen, Grishelda Hogan, Mercy’s therapist, stated that she had contacted DPPC to report the removal of Mercy from Karen’s home, and had relayed other concerns about Venture’s treatment of Mercy to DDS.
Hogan said that while Mercy was being kept in the Worcester family’s home, she “was reporting intense anxiety, difficulty sleeping, feeling sad and defeated, missing her home and her cat and her shared living monitor. She was reaching out to me consistently asking for help and advocacy to get home.”
DDS acknowledged, but did not assess allegations
In a Complaint Resolution Letter, dated September 30, in response to Karen’s complaint, DDS Area Director Denise Haley acknowledged that Karen had reported that Mercy had been removed from Karen’s home. Haley’s letter also stated that Karen had reported that a Venture job coach had previously threatened Mercy that she would be fired from her job, and that a second Venture employee had previously threatened to stop driving Mercy home from work.
The Complaint Resolution Letter stated that two Venture employees allegedly removed Mercy from Karen’s home on May 23, and brought her to the home of a “stranger.” The letter stated that Mercy “was very upset (at being removed from Karen’s home) and has been crying every day.”
However, Haley’s letter did not assess whether the alleged actions of the Venture employees were appropriate, or indicate that the allegations had been investigated.
The Complaint Resolution Letter concluded with a statement that Mercy told the DDS investigator that she “is doing fine and does not need any assistance (from DDS).”
In a letter to DDS, appealing the September 30 Complaint Resolution Letter, Mercy denied that she had said she was not in need of services. She also stated that her removal from Karen’s home had been traumatic for her.
“They moved me to a horrible place with strangers that didn’t speak English,” Mercy stated in her appeal letter. “I told (the DDS service coordinator) to get me out of there and bring me back home, that I was not going along with this. I explained that I was happy where I was and no one would listen. No one from DDS did anything to get me home.”
Mercy added that she had stated repeatedly that she wanted to continue receiving shared-living services from Karen, but that Venture had terminated its payments to Karen.
Prior to May 23, Venture had been paying Karen to provide shared-living services to Mercy. But Venture terminated its contract with Karen on the same day Mercy was removed from her home. A notice of termination of Karen’s contract from Venture did not contain a reason for the termination.
Both Mercy and Karen contend that Venture was retaliating against them because they had complained to managers of the organization in April that two of its employees had been verbally abusive toward Mercy.
As a result of the contract termination, Karen said, she has not been paid since May for caring for Mercy in her home.
In July, COFAR first emailed DDS Area Director Haley and to Dorothy Cote, Venture executive vice president and CFO, raising concerns about the removal of Mercy from Karen’s home and the termination of Karen’s shared-living contract. To date, we have not received a response from either Ryder or Cote.
Full investigation should have been undertaken
According to letters dated May 27 to Mercy from DDS Area Director Haley, the allegations made by Karen were referred to the DDS area office to conduct “Administrative Reviews.”
Administrative Reviews don’t appear to be required to meet minimum standards for investigations under the DPPC’s enabling statute and regulations. Those standards for full investigations include requirements that both the alleged victim and reporter of the incident be interviewed by an investigator.
DPPC has a supervisory role to ensure that full investigations meeting minimum investigative standards are undertaken in instances over which the agency finds it has jurisdiction, according to the statute and regulations. A key factor in determining that jurisdiction is that the victim has suffered a “serious” physical or emotional injury.
A serious emotional injury is defined in DPPC regulations as:
An injury to the intellectual functioning or emotional state of a Person with a Disability caused by either the verbal or nonverbal conduct of a Caretaker, including but not limited to, coercion; harassment; the inappropriate isolation of a Person with a Disability from family, friends or regular activity; and verbal assault, including but not limited to, ridiculing, intimidating, yelling or swearing (my emphasis).
In our email on October 17 to Alterio, the DPPC executive director, we argued that the agency does have jurisdiction in this case because we believe Mercy did suffer a “serious emotional injury” as a result of the Venture employees’ actions. As a result, we maintained that DPPC should either have undertaken a full investigation of Karen’s complaint, or should have referred the complaint to DDS for a full investigation meeting at least the minimum standards.
Mercy’s appeal letter additionally stated the following:
I have been treated so badly by DDS and so has Karen (Faiola). My human rights were violated since I have the right to choose where I want to live and I have the right to change agencies. … I was threatened by my coordinator from Venture and my job coach was mentally abusive, yet nothing has been done. Were they investigated? … My life has never been better and Karen is the best provider I ever had in the 20 years I’ve been with DDS and the 5 other homes I lived in.
Hogan, Mercy’s therapist, also stated that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy,” Hogan stated, “that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“
We are hopeful that in addition to undertaking a full investigation of the allegations that Mercy was abused emotionally, the state will finally acknowledge Mercy’s wish to continue receiving shared-living services from Karen. We also hope Karen will finally be paid for providing those services.
Mother praises staff at the Wrentham Developmental Center after state grants her wish to have son placed there
When Janice Marinella first saw the Wrentham Developmental Center campus a few months ago, she had misgivings about whether it was the right place for her 34-year-old son Jeremy.
The red brick buildings on the sprawling rural campus are old, and some looked run-down. At the same time, though, she felt Wrentham was the last chance for Jeremy. He had been living in her home for the previous five years after his last group home closed unexpectedly.
In each of the three successive group homes in which he had lived, he had been either neglected or injured, Janice said.
Janice had to leave her career of 30 years in dentistry to care for her son at home. At first, it seemed like the right decision. But after five years, she felt she couldn’t continue to keep him at home due to the high level of care required. Yet she couldn’t find another safe or suitable residential placement for him.
“I felt that my own health and age were pressing down on me daily,” she said.
Janice Marinella and Jeremy.
But while the appearance of the buildings on the Wrentham campus made her decision to place her son there a difficult one, she soon came to reassess her initial reaction. She said she realized that what goes on inside the buildings at Wrentham is more important than how they look on the outside.
“I no longer see it (Wrentham) as institutional,” Janice said. “I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.
The hallways, the bathrooms are spotless,” she added. While many modern nursing homes smell of urine, she said, that isn’t true at Wrentham. “They really work hard to keep it clean.”
For Janice, the decision by the Department of Developmental Services (DDS) to admit Jeremy on September 20 to Wrentham has opened new and positive possibilities for both him and herself. It was a rare new admission to one of the two remaining developmental centers in the state.
“I’m so grateful that we have now found a real home for Jeremy,” Janice said. “My son deserves a home and family that will serve him after I am gone. This is the first time he has been treated with respect and dignity outside my care.”
Janice added that, “I see placing Jeremy here as an act of love for him. I want to love and support him through this transition, which I’ve made by choice and not due to an emergency.”
Welcomed by staff at Wrentham
Janice said placing Jeremy at Wrentham was “the hardest decision I’ve ever made. I had to learn how to trust again.”
She said the staff at Wrentham helped her to do that. “They were extremely welcoming,” she explained, adding that the staff appeared from the start to be trying their best to accommodate Jeremy’s needs.
And in what Janice said was a first for her, a member of the Wrentham staff told her that they saw “potential” in Jeremy. One member of the staff told her he was “honored” to be able to care for him.
“They have taken everything I express into consideration,” she said of the staff.
Facing a food and nutrition challenge
One of the first challenges the staff faced was to get Jeremy to adjust to the food at Wrentham. It has taken work and communication, Janice said, to ensure that Jeremy, who was used to her cooking, would continue to eat.
Jeremy, who weighed only 104 pounds when he arrived at Wrentham, and is 5-foot, three inches tall, needs to eat 3,000 to 4,000 calories a day, or he will lose weight, Janice said. He has a condition known as “failure to thrive,” which makes any weight loss dangerous to his health.
“The nutritionist, the social worker, the nurse – the whole team came down and talked to me,” she said. After two weeks at Wrentham, Jeremy’s weight actually went up, from 104 to 106 pounds.
Jeremy in his new room that the staff painted and Janice decorated, at the Wrentham Center.
Janice said when she told the staff that Jeremy does not generally engage in communal activities, but often likes to be by himself, the staff offered to make an unused room across the hall a sitting room available for him alone. He will be able to watch his TV set there.
The staff have been involved from the start, she noted, in making sure Jeremy has fulfilling activities. She said that during his first two weeks at Wrentham, they took him for walks, and took him in a van to an adult education program.
Jeremy also attended a fall festival on the campus, with lunch delivered outside. The staff provided Janice with a photo of Jeremy at the festival, holding a puppy on his lap. He will also attend the Center’s upcoming Halloween party.
“We are so excited to begin his swim program in the pool,” she added.
After a month of visiting Jeremy in his new home, Janice said she wants to work “to open the door to Wrentham to other parents.” Jeremy is apparently one of the first new placements at Wrentham in years. “I want to show others that this can work.”
“It’s such a blessing that they see potential in him,” she said.
Almost zero new placements at Wrentham in recent years
Developmental centers, also referred to as Intermediate Care Facilities for individuals with intellectual disabilities (ICF/IIDs), must meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.
That has created a perception among policy makers that ICFs/IID are more expensive to operate than are group homes. However, it is not necessarily an accurate perception.
For the past several decades, ICFs/IID such as Wrentham and the Hogan Regional Center in Massachusetts have bucked a nationwide, ideological trend toward the closure of congregate care facilities. Starting in 2008, the administration of then Governor Deval Patrick closed four of the six remaining developmental centers in Massachusetts.
Since Fiscal Year 2012, as the ICFs/IID have been closed, the developmental center line item in the Massachusetts budget has shrunk by $78 million, or 42%, while the privatized group home line item has risen by $563 million, to over $1.4 billion.
That increase in the corporate provider line item appears to belie the promise that closing the developmental centers would save state taxpayers tens of millions of dollars in caring for persons with developmental disabilities.
As we reported last year, the Baker administration has largely declined to offer the Wrentham or Hogan Centers as options for people seeking residential placements in the DDS system in Massachusetts.
From 2018 to 2020, DDS documents state, the residential population or census at the Wrentham Center declined from 248 to 205, while admissions to the Center declined from only two in 2019, to zero in 2020.
The Patrick and Baker administrations and other opponents of ICFs/IID have also argued that the centers segregate clients from the wider community. But we have long maintained that that claim lacks evidence to support it.
The Wrentham Center, in fact, feels like a community, according to many family members and guardians of the residents there. The campus provides an array of centrally located services that cannot be found in any community-based group home in the commonwealth. Even so, Janice maintains the Wrentham Center doesn’t have an institutional feel to it. The campus has a mix of larger residential buildings and smaller, multi-bedroom homes.
Jeremy holds a puppy at the Wrentham Center fall festival.
Janice said that when she took Jeremy out for a walk on the campus on Tuesday (October 11), “I cannot even tell you how many folks said hello to us, slowed down and waved while passing, smiling, so happy to see us. I am overwhelmed by it. Every time I have gone to Jeremy’s unit, multiple people have come to say hello and discuss how Jeremy is doing and to express their happiness that he is in their care.”
Community-based system did not work for Jeremy
Prior to moving back home with Janice in 2017, Jeremy had lived in two provider–operated and then one state-operated group home. Janice said he was neglected and suffered serious injuries in those residences in a number of instances.
After Jeremy’s state-operated home in Dartmouth was suddenly closed in 2017, Janice decided he needed to live at home with her. She agreed at that time to voluntarily transfer her guardianship of her son to her ex-husband, Ed, so that she could be paid as her son’s caregiver. She said Ed was supportive of her efforts to care for Jeremy and, in the past year, to find a new placement for him.
But the search for a new placement was frustrating. Janice said she was continually told by DDS that there were no residential settings available in the Department’s New Bedford district, where she lives.
She said that after she contacted COFAR in March of this year, Colleen Lutkevich, COFAR’s former executive director, worked with DDS officials to arrange a tour of the Wrentham Center for her and Jeremy, and to gain approval for Jeremy’s admission there. Colleen’s sister Jean has lived at Wrentham for more than 60 years.
Wrentham needs to become a choice
Janice believes the Wrentham Center could and should become a residential option for more people with disabilities. She said she would be happy to talk with other family members or guardians about the facility.
“My son was warehoused in group homes,” she said. “At Wrentham, it’s about the staff and the opportunities. This is where he (Jeremy) was meant to be.”
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.
UPDATE: Ban on mother’s contact with son at least temporarily lifted
[UPDATE TO YESTERDAY’S POST (BELOW): Cindy Alemesis was informed yesterday (August 30) that the ban on family contact with her intellectually disabled son Nick would be lifted as of today, at the end of a 14-day period specified by Nick’s group home provider and DDS co-guardian (see post below).
However, Cindy also said that in a phone call yesterday, the Incompass group home manager told her the ban on all contact could be re-imposed if Nick continues to display aggressive behaviors. Cindy believes Nick has been acting out because he may have been abused in the group home, and that he wants to leave it.
Cindy said she asked the group home manager whether the ban on family contact was actually a form of punishment of Nick. “I said to him, ‘so, as punishment, Nick loses his mom?’” Cindy said. “And he said, ‘well Nick has to learn.’”
In a text message to Cindy yesterday, the Incompass director of residential services, said Cindy will be allowed to visit Nick at the group home this Saturday. She will also be allowed one 10-minute phone call a day with Nick. But the Incompass director stated that the phone call would be terminated by staff, “if Nick begins displaying unsafe/inappropriate behaviors during the call.”]
Cindy Alemesis, who saved her intellectually disabled son Nick’s life in 2018, was subject to a ban on all contact with him for the past two weeks because Nick allegedly began behaving aggressively after her visits and phone calls.
The ban was imposed on August 17 by Incompass Human Services, a Department of Developmental Services (DDS) group home provider, and by a co-guardian of Nick, who is paid by DDS. The Department is, meanwhile, continuing an effort in probate court to remove Cindy as her son’s other co-guardian for reasons that have never been made clear.
Nick Alemesis and his mother Cindy
Cindy believes Nick acts aggressively because he doesn’t want to remain in his group home in Dracut, and may have been abused there. Cindy has reported at least two incidents of injury suffered by Nick in the Incompass residence.
Both Incompass staff and DDS have failed to report those injuries to the Disabled Persons Protection Commission (DPPC), as required by law.
Neither DDS Commissioner Jane Ryder nor Jean Phelps, the Incompass CEO, have responded to an email last week from COFAR raising concerns about the ban on contact and the alleged failure to report the injuries.
Similar to past bans on contact
The ban on family contact with Nick is similar to bans imposed in at least two other cases, which led to emotional pain and suffering for DDS clients and their families (see here and here).
As we noted in our email to Ryder and Phelps, cutting off family and social contact with DDS clients is an extreme measure that runs counter to their well being and rights under DDS regulations to support human dignity. Among those fundamental rights is the right to visit and be visited (115 CMR 5.04).
In Nick’s case, the ban on contact also follows from previous restrictions imposed by Donna Nolan, the DDS co-guardian, on Nick’s visits to his church and community.
Reason for latest ban on contact disputed
Records sent to us by Cindy show that Incompass has charged that Nick has engaged in “unsafe and self-injurious behaviors” after visits or phone calls from her and other family members.
In an Incompass document titled, “Human Rights Request for Approval of Restriction,” both Phelps and Nolan signed their approval on August 17 of a 14-day ban on all family communication and visitation with Nick as well as “access to social situations” for Nick. The document, which concerned both family visits to the group home and visits by Nick to Cindy’s home, left open the possibility of extending the ban indefinitely.
The document stated that after speaking with his mother by phone on August 9, Nick threw a phone and later a stone from his bedroom at staff, and refused to take his medications.The document alleged that Nick was taken that day to Lowell General Hospital where he exhibited similar aggressive behaviors after Cindy called him and then visited him there.
The Incompass restriction document, however, did not identify any statements or actions by Cindy or any family members that might have incited Nck to act out. Cindy contends Nick acts out because he does not want to live in the group home, or return to it when he is taken elsewhere.
We would echo Cindy’s concern that conditions in the residence itself may be causing his behaviors and injuries. We think the solution to the problem is to change his residential setting.
Text messages and statements from Nick indicate that he may be afraid of being hurt or injured by staff in the group home. Cindy said Nick has told her that staff have “hurt his head.” Cindy also forwarded a July 28 text message from Caitlyn Alekshun of Bridgewell Counseling Services indicating that there is uncertainty as to why Nick has been agitated and engaging in possibly self-injurious behaviors.
As discussed below, an earlier message from Alekshun to Nick’s service coordinator indicated that the group home staff were not providing timely information to her about the possible cause or causes of Nick’s behavior.
We haven’t seen any records that indicate that either Cindy or other family members have done or said anything to incite Nick to act out or injure himself. In a July 21 email, Nick’s DDS service coordinator wrote that he had “observed Nick become dysregulated. Staff report that it is like this every day.” That would appear to rule out Cindy as the sole, or even main cause of Nick’s behaviors.
However, the August 17 restriction document, signed by Phelps and Nolan, concluded that:
Due to these recent events and to Nicholas’ increasingly unsafe behavioral response to interactions with Cindy, both in person and by phone, it is proposed that Nicholas does not have any communication or contact with family members (including, but not limited to Cindy…) for a period of 14 days. This period of time will allow the program to work more effectively with Nicholas to keep him safe, unencumbered by external stimuli that may significantly impact his ability to regulate his emotions and subsequent behavior.
At the end of this initial 14-day period of no-family contact, the treatment team will revisit this restriction and assess whether continuing the practice is warranted for an additional 14-day period(s).
Staff not providing information to clinician
The restriction document did not make it clear how or why contact with Cindy or other family members would incite Nick to engage in aggressive behaviors. We think that without establishing a clear cause of those behaviors, Incompass has not made a case for restricting family contact.
Nick (right) and his pastor, the Rev. Keith Phemister, and Keith’s wife Gloria. Nick has been restricted at least twice this year from visiting his church.
In fact, records indicate that the group home staff have been uncooperative with at least one clinician seeking to determine the cause of Nick’s aggressive outbursts.
In response to the service coordinator’s July 21 email, Alekshun of Bridgewell wrote that she had requested “recent behavioral data from the residence a few times, but haven’t received anything more recent than May.” Such data, she wrote, might “help justify the need for an inpatient placement” for Nick at a hospital setting.
Failure to report injuries
We are also concerned that DDS and provider staff have failed to report potentially serious injuries that Nick suffered in the group home, as required by law. In the most recent case, Cindy said she was forced to report a head injury that Nick suffered on March 16 to the DPPC because the injury had not been reported by the staff.
Both the DDS Decision Letter and subsequent Action Plan resulting from the March 16 incident stated that the alleged abuser didn’t report the injury.
Cindy said the incident resulted in bleeding from Nick’s ear, which would classify the injury as a serious physical injury under DPPC regulations. Nick received emergency room treatment for the injury.
DDS declines full investigation
After Cindy reported Nick’s March 16 head injury, DDS apparently conducted a limited Administrative Review of the incident. Administrative Reviews do not meet DPPC standards for full investigations. The DDS Decision Letter, issued after the review was completed, acknowledged that a “regulatory investigation” had not been conducted.
Given, in particular, that the bleeding Nick suffered from his ear would classify the injury as serious under DPPC regulations, it would appear that either DPPC or DDS should have conducted a full investigation of the matter, and not an Administrative Review. The DDS Decision Letter did not explain why a full “regulatory investigation” was not done.
The DDS Decision Letter concluded that as a result of the limited review, there was insufficient evidence to conclude that Nick had been abused by a staff member, and that Nick had “acknowledged” his injury had been self-inflicted. However, the Decision Letter did not disclose who was interviewed by the investigator. Cindy said she was not interviewed, and it is not clear whether even Nick was interviewed, based on accounts in the Decision Letter and subsequent DDS Action Plan.
The Action Plan, in fact, stated that, “It was reported by the provider that (Nick) exhibited self-injurious behaviors (SIB) causing injury to himself and was restrained.” (my emphasis). This statement appears to imply that the DDS investigator may have relied on an account from the provider, possibly even from the alleged abuser, in concluding that Nick had injured himself.
Both the Decision Letter and Action Plan said only that “during the course of the investigation witness(es) were interviewed and relevant documents were reviewed.” There was no specificity as to which documents were reviewed, or which witness or witnesses were interviewed. In fact, it isn’t clear, based on the word “witness(es),” whether more than one person was actually interviewed.
DPPC regulations (118 CMR 5.02) require that in full investigations, the investigator interview the reporter of the injury — in this case, Cindy. Cindy said that never happened.
The regulations also require that the investigator provide an assessment of the “immediate protective services needs” of the alleged victim to prevent the risk of further harm. There was no indication in the Decision Letter or Action Plan that such an assessment was done in this case.
The Action Plan recommended only that Nick’s residential and day provider staff “create a communication log that documents such incidents so everyone is informed.” There was no recommendation in the Action Plan relating to failure of the provider or DDS to report the injury to DPPC.
Similarly, DDS and DPPC declined to undertake an investigation of an incident in 2018 in which Nick contracted sepsis and spent eight months in a hospital because of the apparent negligence of staff in his group home. That incident was also not reported by the provider staff or by DDS to DPPC.
No response from DDS or Incompass
As noted, on August 25, I sent an email to both DDS Commissioner Ryder and to Phelps, the Incompass CEO, noting our concerns about the restriction on family contact and about reports of poor conditions and staff treatment of Nick that led him to state and text to his mother that he did not want to remain there. As such, I wrote, we are concerned the residence is potentially unsafe for Nick. To date, I haven’t received a response to my email.
We urge DDS and Incompass to reconsider the restrictions placed on family contact with Nick. We also urge DDS to conduct a full investigation of the injury that occurred to Nick on March 16, and to investigate the care and conditions in the residence.
Finally, we urge DDS to work with Cindy to identify another residential setting for Nick or a placement in an Intermediate Care Facility such as the Hogan Regional Center.
COFAR blog 