Archive
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.”
COFAR blog 