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Mother says she is being ‘railroaded’ out of her guardianship by unfair court report

May 4, 2022 6 comments

The mother of an intellectually disabled man says she is being unfairly accused in probate court of having a conflict of interest in caring for her son, and that the conflict charge is being used to limit and possibly eliminate her co-guardianship rights.

Valerie Loveland said that in an April 19 Barnstable County Probate Court hearing on Zoom, an investigative attorney appointed by the judge presented a report concluding that Valerie had a conflict because she both sells natural medicinal products to customers and provides those products to her son.

Valerie maintains, however, that she derives no material benefit from the arrangement involving her son. She said her son buys the products directly from the company, Young Living Brand. She said his primary medical care provider approves all of his alternative medicines in accordance with his group home’s policy.

Valerie’s 24-year-old son is a resident of a group home on Cape Cod run by the May Institute, a corporate provider to the Department of Developmental Services (DDS). Valerie has asked that her son’s name be kept private.

We have previously reported that Valerie has been fighting both a motion to limit her co-guardianship of her son and a move to evict her from her subsidized apartment due to an alleged technical violation of her lease.

The motion to limit Valerie’s co-guardianship was filed in March by John Cartwright, an attorney who is paid by DDS to serve as Valerie’s son’s other co-guardian. Cartwright’s motion seeks to remove Valerie’s authority to make medical decisions for her son and to transfer her authority as representative payee for her son’s Social Security funds to the May Institute.

(Valerie said yesterday that her housing situation was being resolved favorably for her after discussions with housing officials.)

Health clinic program director approves natural medicines

In an April 27 letter, Gretchen Eckel, a certified physician assistant and a program medical director at Outer Cape Health Services, said Valerie’s son’s natural medicines have been subject to “shared decision making to permit these treatment plans.”

Eckel said she has seen “no harm or risks” to Valerie’s son caused by the use of the alternative medicines. She described Valerie as “a tremendous advocate for (Valerie’s son’s) needs, and I believe she has always had his best interests in mind.”

Valerie says she was not interviewed by guardian ad litem

Valerie contends she is being “railroaded” by Cartwright’s motion and by the report alleging that she has a conflict of interest in providing the natural medicines to her son. The report was writtten by Christopher Lebherz, who was appointed by the court in the case as a guardian ad litem (GAL). In Massachusetts, a GAL is an independent investigative official, often an attorney, who assists the court in guardianship cases.

Valerie said she was neither interviewed by Lebherz for his report, nor was she provided with a copy of the report either before the hearing or since. She was allowed by the judge in the case, Susan Sard Tierney, only to view the report and take notes on it in the courthouse, following the hearing. She was not allowed to make a copy of it.

The GAL’s report has been made available, however, to both Cartwright and to Carol Coyne, a DDS attorney in the case, according to an April 19 order issued by Tierney.

Valerie said the GAL’s report indicates support for the motion by Cartwright to limit her co-guardianship. Due to the GAL report’s confidential nature, COFAR has not been able to obtain a copy of it.

Valerie termed “caring and concerned mother”

In an email in response to a query I sent, Lebherz said he was “concerned about a conflict of interest or the appearance of a conflict of interest (on Valerie’s part) regarding rep payee.”

Lebherz also said he “spoke with Valerie and all other interested parties” in the case.  He said he “asked her (Valerie) and others to summarize all of their positions and send it all along to me.”

Lebherz also said he did not recommend that Valerie lose her medical decision making authority. He added that he “reviewed the case history and all filings,” and that he visited the May institute.

Lebherz declined to respond to my follow-up question whether he had found or presented any evidence in his report that Valerie had derived any material financial benefit from providing natural medicines to her son.

He also declined to respond to my follow-up question whether “speaking” with Valerie and asking her to “summarize her positions” constituted an interview, or whether he had specifically asked her about the alleged conflict of interest.

Lebherz, nevertheless, said, “All parties agree Valerie is a caring concerned mother. These are difficult issues and situations and we all try to do our best.”

While Lebherz said he didn’t recommend that Valerie lose her medical decision making authority, Valerie said that Lebherz stated in his report that he agreed with Cartwright’s motion that her medical decision making be limited to consenting to medical treatments directed by others.

“I raised (her son) completely alone,” Valerie said. “I worked where I could, managed his money and medical appointments, all of it for 18 years, below the poverty line. Now they’re trying to take everything away. What have I done?  I’ve never heard of anyone doing everything right and being treated so badly.”

Guardian ad litem standards require an interview and detailed fact finding

Under Massachusetts standards for guardians ad litem, the GAL must “provide each party with a separate interview so that each party may speak with candor.” (Section 4.4)

The GAL must also “conduct  the investigation in a fair and balanced manner”(6), and the GAL’s report “should provide accurate, detailed and balanced information about the parties and their children.”(8)

In addition, the GAL report should include “all relevant facts collected from all sources, including facts that are consistent and inconsistent with other reported facts.”(8.2). Further, the report must “set forth the connection between the facts and the conclusions or recommendations.”(8.5)

If Lebherz’s report concluded that Valerie has a conflict of interest, the GAL standards would appear to require that the report include relevant facts that support that conclusion, such as the extent of any financial benefit that Valerie received as a result of the alleged conflict.

No material benefit from providing natural medicines to son

Valerie said the GAL’s report alleged that she has a conflict of interest because she has provided natural medicines and other products to her son, and that she has a business in which she sells those products. She said that appears to be the primary reason that Lebherz recommended that she be removed as rep payee and that all medical decisions be made solely by Cartwright.

In fact, Valerie said, she has not derived a material financial benefit from her son’s use of the medicines. She said her son purchases the products directly from the company with his own money. She and her son both have accounts with the company and receive points for their purchases.

Valerie said she receives an average of $5 a month in “commissions” from her son’s purchases. “I set it up so that when I died whoever handles his account could continue ordering his supplies for him,” she said.

It doesn’t appear that the fact that Valerie sells natural medicines and has established an account for her son for those products would be a conflict unless she received a material financial benefit from that. As a user and seller of natural medicines, she might naturally be inclined to encourage her son to use them.

Valerie says Cartwright, the DDS co-guardian, has long opposed her efforts to provide natural medicines and essential oils to her son.

In her April 27 letter in support of Valerie, Eckel, the certified physician assistant, said Valerie’s son has been her primary care patient since 2014, and that she last examined him on April 27.

Eckel said Valerie raised her son since birth, and raised him independently since the age of three when his biological father left them. She said that since Valerie was appointed as her son’s co-guardian in 2016, Valerie has attended most of his medical visits “with the exception of a very few visits” when he was attended by staff of the May Institute.

Eckel added that “Valerie has opted for natural treatment options when available and safe for (Valerie’s son’s) ailments over the years, and we have used shared decision making to permit these treatment plans as I have seen no harm or risks to these strategies.”

Valerie said natural or alternative medicines are considered complementary to, and not a replacement for, western or modern medicines. She said the natural supplements and treatments provided to her son are in addition to his modern medications, and that he is fully vaccinated for COVID and for childhood diseases.

“I had an informed conversation with Gretchen (Eckel) regarding the vaccinations and their effectiveness, side effects, etc., before giving consent to the May to proceed with their vaccination clinics,” she said. She added that “May staff also reports he’s doing great since these changes (use of natural medicines) have been made.”

This is one of several cases on which we’ve reported, which raise questions about the fairness of the DDS and probate court systems, particularly when it comes to family members who lack financial resources or attorneys to represent them.

Our justice system isn’t supposed to function differently for people who lack those resources; but we’ve seen a number of instances (see here and here) in which that has unfortunately been the case.

Mother protests state’s restrictions on son’s contact with church, and questions safety in his group home

April 7, 2022 26 comments

Note to Readers:

Last week, we reported here about Valerie Loveland’s fight against efforts to limit her co-guardianship of her son and evict her from her apartment.

This week, we are updating the case of Cindy Alemesis, the mother of another client of the Department of Developmental Services (DDS). As we have previously reported, DDS is continuing an effort to remove Cindy as her son’s co-guardian even though Cindy acted to save her son’s life in 2018.  

A hearing in Middlesex Probate Court on DDS’s guardianship removal petition against Cindy has been scheduled for May 5.

Cindy says that in addition to trying to remove her as her son’s co-guardian, the state is imposing unfair and punitive restrictions on her son’s contact with the community and with his church. She says the church, which she also attends, has been a “lifeline” for her 30-year-old son Nick.

Cindy also said she is concerned about Nick’s safety in a group home in Dracut in which he suffered an apparent head injury last month.  The group home is operated by Incompass, Inc., a corporate provider funded by the state.

In seeking to remove Cindy as co-guardian of Nick, DDS appears to be trying to give sole guardianship to the other co-guardian who is paid by the Department. Cindy contends that co-guardian, who has other wards, has rarely visited Nick.

Nick and Cindy Alemesis

In 2018, Cindy appears to have saved her son’s life after she discovered he was ill following a church service. She insisted he be taken to a hospital, where doctors discovered that a shunt in his brain had been leaking fluid into his stomach. Nick spent 10 months in the hospital with sepsis, and underwent numerous brain operations and other procedures as a result.

The 2018 incident was not investigated by the Disabled Persons Protection Commission (DPPC) even though Zaheer Ahmed, Nick’s doctor, charged that staff in the group home failed to bring Nick to a scheduled ultrasound appointment. According to the doctor, that ultrasound would have revealed the fluid leaking from the shunt.

Dr. Ahmed recently wrote a letter to the probate court, supporting Cindy and opposing DDS’s attempt to remove her as Nick’s co-guardian.

Recently injured in group home

Cindy contends that care and safety problems have persisted in Nick’s group home, and said she thinks Nick may have been physically abused in the residence on or about March 18.

Cindy has been out of the country since March 14 on a church-sponsored missionary trip to Nigeria. While there, she received a call from her mother that Nick was bleeding from his ears in his group home, and had been  taken by ambulance to a hospital. In addition, she said, his face was bruised.

Cindy said no one from the group home has responded to her questions about the incident, but that staff told her mother Nick’s injury was self-inflicted by banging his head against a wall.

Cindy said, however, that she has never witnessed Nick injure himself. She also said Nick is afraid of the group home, and has told her people are hurting him there.

No incident report apparently filed with DPPC

On Monday (April 4), Cindy called the DPPC to ask if a report was ever filed about Nick’s injury and hospitalization in March. She said the DPPC informed her on Wednesday that no report had been filed.

Under state law, the group home staff must report any case of suspected abuse or neglect to the DPPC.

Cindy said she called the DPPC hotline number this morning (April 7) to file a report herself with the agency about the March incident, but was told the wait time was 50 minutes due to a high volume of calls. She said she left a voicemail message asking for a callback, and planned to try to call again.

She was finally able to call in the report later on April 7.

According to a DPPC guidance document, even self-injurious incidents and unexpected hospital visits should be reported because they may indicate negligence of a caregiver or provider.

DDS Co-guardian writes letter restricting Nick’s visits to church; cites safety concerns

Rather than investigating or addressing conditions or care in Nick’s group home, Cindy said, DDS officials have moved instead to restrict her son’s contact with his church and community.

Following Nick’s injury in March, the DDS co-guardian wrote a letter to Cindy and the group home staff, which imposed a restriction on Nick’s attendance at his church in Londonderry in New Hampshire. The March 24 letter stated that,“Nick can go to church only if Cindy can take him and she provides supervision.”

The co-guardian’s letter also imposed restrictions on Nick’s contact with the community. The letter stated that, “Nick cannot go to church or access the community with (his) Uncle Danny or any friends from church due to issues of liability. They can visit him at the group home only. Incompass will find a local Baptist church where staff can supervise him.”

Given that Cindy has been out of the country, she said Nick has been unable for the past month to visit his church. She said she doesn’t understand why DDS would react to an injury to Nick that occurred in his group home by restricting his contact with his church and with the community.

For years, Cindy said, Nick has been taken to church services and functions from his group home either by family members or friends. Cindy herself doesn’t drive, and depends on those people for transportation to the church as well.

It is not clear what authority the DDS co-guardian has to restrict Nick’s church attendance. However, Nick’s DDS service coordinator texted Cindy on March 29, stating that the co-guardian’s “guidance” was “fair.”

Cindy said going to church is Nick’s principal social activity, and that his life revolves around church functions. He has been attending the church since he was five years old.

However, the DDS co-guardian’s letter stated that, “Nick presents a risk to the community, and is a risk to reoffend.” There was no explanation in the letter as to what type of risk Nick presents or what offenses Nick may have committed there.

In his March 29 text to Cindy, Nick’s DDS service coordinator stated that, “Nick is having an alarming increase in temper tantrums. He is exhibiting self-injurious behavior. He has a forensic history. There are concerns of him reoffending. There are issues of liability. He isn’t safe to go out into the community unsupervised. Period.”

Two incidents in 2014

Cindy said the references to Nick having a forensic history are apparently to two incidents that occurred in 2014. In one, she said, Nick “kissed a girl’s hand and wanted to walk her home.  He knew her from school.” That same year, she said, “he urinated outside.”

Cindy said that in the wake of those incidents, Nick was found by the probate court to be incompetent, and Cindy agreed to become his co-guardian. He was never charged criminally. Cindy said Nick was first placed at that time in a group home. She said there have been no similar incidents since 2014.

Cindy said Nick has never been violent with others in the community, and has never had a forensic history, which implies criminal activity.

Cindy says no basis for restrictions on church and communty contact

In her March 24 letter, the DDS co-guardian stated that Nick “can go to lunch with mother or walks with father if conditions met.” Among those conditions are that, “There must be no temper tantrums, property damage, or incdents of self injurious behavior for 48 hours prior to event.” The co-guardian’s letter added, “Behaviors documented after interactions with family.”

Cindy maintained, however, that Nick has never had any problems with safety or injury in his church or in the community.

Pastor confirms he never saw Nick cause problems in church

The pastor of Nick’s and Cindy’s church, the Reverend Keith Phemister, confirmed Cindy’s assertion that Nick has never caused problems in his church.

“We’ve never had a problem with Nick,” Phemister said. “He’s never hit or hurt anyone here.” He said that a few months ago, Nick expressed anxiety at having to return to the group home. “He doesn’t like it there for some reason,” he said.

Phemister confirmed that as a result of the DDS co-guardan’s letter, Nick has 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.”

On March 29, Cindy texted the service coordinator, saying, “ When I die, Nick will have no more church. … Why. Why take it away.”

The service coordinator texted back, saying, “Nick’s family and church friends can visit him anytime at the group home. I will not respond to anymore emails at this time.”

DDS not providing supported resasoning for its actions

In our view, DDS is attempting to remove Cindy as her son’s guardian, apparently without regard for the fact that she is the one person who has clearly acted in his interest in saving his life and advocating for his safety.

Nick does not appear to be safe in his group home and has expressed a fear about being there. He was injured there last month. Yet, the response by DDS officials has been to restrict his contact with his family members, his friends and his church, and the community as a whole.

Nick does not appear to pose any risk of harm to himself or others in his church or the community.

The DDS response does not appear to make sense. That’s may explain why the service coordinator doesn’t want to respond to further email inquries from Cindy.

Mother fighting both removal of her guardianship rights and eviction

April 1, 2022 5 comments

The mother of a man with a developmental disability has found herself having to fight both an effort to limit her co-guardianship of her son and a move to evict her from her subsidized apartment.

For Valerie Loveland, whom we have written about before, this two-front battle is the latest chapter in her years-long struggle with a system that seems to be designed to override rather than uphold her and her son’s rights.

Valerie is co-guardian of her 24-year-old son who is non-verbal and needs 24-hour care. He has been a resident for the past six years in three separate group homes on Cape Cod run by the May Institute, a corporate provider funded by the Department of Developmental Services (DDS).

Valerie has asked that her son’s name not be published.

A motion to limit Valerie’s guardianship rights was filed in early March in Barnstable County Probate Court by her son’s other co-guardian – an attorney who is employed by DDS.

Valerie Loveland

This is one of a number of cases we have reported on in which DDS has sought, or is seeking, to limit guardianship rights of family members or remove their guardianships altogether. (See here, here, here, and here.)

Valerie said DDS had first attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement.  The other co-guardian has other wards as well.

Valerie contends that the DDS co-guardian virtually always sides with the May Institute, which she says has failed to provide adequate care for her son. The co-guardian also opposes Valerie’s use of prescribed natural medicines for her son’s care.

Emails show the DDS co-guardian also objected last year when Valerie temporarily removed her son from a previous May Institute residence after he was allegedly sexually assaulted there. More recently, the co-guardian opposed a decision by Valerie to remove her son temporarily from his current residence after she said she was informed he had suffered a head injury there.

Eviction notice based on apparent technicality

The eviction proceedings were launched against Valerie in December by her landlord, Lake Street Limited Partnership, and its managing agent, The Community Builders, Inc., a nonprofit corporation. The eviction notice is based on what appears to be a technical violation of the lease for her Chatham apartment.

Valerie said she has never failed to pay her rent on time. The issue raised by the landlord in the eviction notice is that Valerie is a full-time college student. The notice states that as a full-time student, Valerie is in violation of a provision of her lease stating, among other things, that a household with a full-time student must also include a single parent with children.

Valerie said that after receiving the eviction notice, she emailed the attorney for the landlord, asking whether her son’s weekly visits home satisfied the lease provision. She said she received no response to her query.

A DDS official even wrote to a housing official involved in the management of Valerie’s apartment complex on March 2, confirming that Valerie’s son needs to have a room maintained for him in the apartment. That message from DDS, however, apparently has had no effect on the decision to evict her.

Both issues are coming to a head this month. A Southeast Housing Court mediation session has been scheduled for April 11 in the eviction case; and a hearing on the motion to limit Valerie’s guardianship rights has been scheduled for April 19 in Barnstable County Probate Court.

Son’s care has taken a financial toll

Valerie estimates that it cost her thousands of dollars in lost income while she cared her son at home last year and drove him each day to his day program in Mashpee.

She works in grocery delivery and part-time in aromatherapy, Reiki, and low-carb diet counseling, and is pursuing an online college degree in alternative medicine.

Valerie and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about two or three years old. Valerie cared for her son at home until he was 18.  Her ex-husband owes her child support, she said, but has disappeared.

Valerie takes pride in her studies in alternative medicine. She is a sophomore in the online Bachelors in Alternative Medicine program at Everglades University of Boca Raton, FL. She is studying to become a qualified naturopath, and passed her ethics semester with high honors (597/600 points.)

DDS co-guardian seeking to and limit Valerie’s ability to make medical decisions

In a motion filed March 2 in Barnstable County Probate Court, the DDS co-guardian stated that he was seeking to transfer Valerie’s authority as “representative payee” regarding her son’s Social Security funds to either the May Institute or to himself.

The co-guardian’s motion also asked that Valerie’s medical decision making be limited to consenting to medical decisions made by others, and that Valerie be barred from removing her son from the May Institute home in the future.

The motion further stated that “it is believed” that Valerie’s “motivation” in bringing her son home to her “is primarily based on it being the only way for her to retain her present housing.” The motion referenced the eviction proceeding against Valerie.

Valerie said the co-guardian had been threatening for years to seek her removal as co-guardian of her son.

Not seeking financial remuneration

In a statement she sent to the Probate Court this week, Valerie said that she isn’t paid for caring for her son and isn’t seeking payment for that. “I want what everyone parent wants for her child. For him to be successful at his program, happy at his home life, and stable enough to mature,” she wrote.

Son’s behaviors and health are linked to his diet

Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses.

Valerie maintains that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.

Last May, however, the DDS co-guardian stated to her in an email that her changes to her son’s diet constituted “a major step, especially if the reason is not medically required.”

Natural medicines and supplements are prescribed by doctor

Valerie said her son’s diet has been prescribed by his doctor, who has supported her request that the May Institute not feed him packaged processed foods. “The additives and chemicals are too much for his system,” she said.

Valerie added that alternative medicine has been her son’s primary medicine. She said he had strong allergies  as a baby, including an allergy to infant Tylenol. “It’s no secret that a child with autism already has a compromised immune system. I had to work very hard to build his system up to be tolerant of vaccinations, and antibiotics and over-the-counter meds,’ she said. “ I knew a day would come where I wasn’t going to be in his life.”

Removed son temporarily from home in February

Valerie said that this past fall, she was informed by her son’s doctor that her son had been banging his head frequently in his group home. She said she had not been made aware of that by the group home staff.

The situation has continued, she said. In late February of this year, she took him home after a repeat of the incidents last fall. She said she again received a message that her son had been banging his head and had not received medical attention for it. “No one was returning my calls, so I went and got him,” she said.

That was when the DDS co-guardian filed the motion in court limiting her guardianship and preventing her from removing her son from the group home. In response, she said, she returned her son to the May Institute residence.

In an affidavit attached to his motion to limit Valerie’s guardianship, the DDS co-guardian maintained that Valerie had indicated in emails that she intended to bring her son home permanently. The co-guardian alleged that she was doing this to avoid eviction from her apartment.

Valerie maintained, however, that her intention in bringing her son home was to protect him. “My son communicates with behaviors,” she said. “When he’s frustrated he bangs his head. When he’s sick he bangs his head. I’m very concerned that with six residents in his group home and with only three and sometimes two staff on hand, that it’s a safety issue.”

Co-guardian opposed removal from group home despite abuse allegation

In March 2021, Valerie said she was informed that her son had been abused sexually by a staff member. She has still not been provided with details of the abuse or information as to whether there have been criminal charges filed in the matter.

In the wake of that incident, Valerie said she took her son home with her and sought placement of her son in another facility. But the DDS co-guardian objected to an alternative placement to the May Institute residence.

In a May 25, 2021, email, the DDS co-guardian stated, “I trust the May Institute and its staff to be working for the best for (Valerie’s son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”

As late as June 2, 2021, the co-guardian said he continued to “fully object to his (Valerie’s son’s) removal from May until a response from DDS is obtained.”

Valerie said the co-guardian finally relented regarding removing her son from the first group home, and later in June of last year approved his move to the new residence.

Disregarded and disrespected by co-guardian and staff

After Valerie’s son was placed in his latest May Institute residence in Cotiuit last year, it appeared things were getting better. The staff appeared to be making an effort to follow her requests to improve her son’s diet, and were carrying out his occupational therapy plan.

But Valerie said her son’s continuing head-banging incidents earlier this spring and the co-guardian’s motion to limit her guardianship rights have convinced her nothing has really changed.

Valerie maintains she has been continually “disregarded and disrespected” by the DDS co-guardian and by the group home staff. “My son needs someone in addition to me who is willing to educate themselves in occupational therapy and willing to listen about alternative medicine, and, if necessary, advocate for my son,” she wrote in her recent statement to the probate judge.

We hope that DDS will reassess this case and the track record and actions of its co-guardian. Valerie’s rights as her son’s guardian should not be limited. We also intend to advocate for Valerie in her fight to stay in her apartment.

As a parent whose interest is maintaining the wellbeing of her child, Valerie should not also have to fight a system that is apparently trying to make her homeless.

Mother, who was charged with abuse after giving son Tylenol and cough syrup, says he is being neglected and isolated in his group home

January 19, 2022 10 comments

Christine Davidson, who has been charged by the state with abuse after she gave her son prescribed cough syrup and Tylenol, says the real problems her son is facing include isolation and neglect in his group home.

We have joined Christine in expressing concern to the Department of Developmental Services (DDS) about conditions in the residence and a ban on home visits from her son John.

John Davidson is a resident of a group home in Waltham, which is run by WCI, Inc., a corporate provider to DDS. Christine contends that the conditions under which John is now living violate a number of DDS regulations referred to as “standards to promote dignity” (115 CMR 5 et seq.).

Christine is a co-guardian of her son. The other co-guardian, George Papastrat, is Christine’s nephew and lives in North Carolina.

Christine wants to take John back home with her, and John has repeatedly said he wants to come home. That is not being permitted, however. She said John is effectively being confined in his group home with virtually no activities.

As we noted in a recent blog post, we have raised numerous questions about the accuracy of a report written by the Disabled Persons Protection Commission (DPPC), which concluded that Christine abused her son after she gave him an “undetermined” amount of cough syrup and Tylenol last June. Since then, John has been subject to a prohibition on visits home based on the abuse finding.

Christine’s attorney, Thomas Frain, who is also COFAR’s president, has filed an appeal with DPPC of the abuse finding.

Last November, I emailed George Papastrat, John’s other co-guardian, with an explanation of our concerns about the DPPC investigation and its apparent bias against Christine. I have not recieved a reply to my message.

Only person left in the home during the day

Christine said she visited John in his group home yesterday (January 18), and found him sitting alone in the kitchen. She said the other three residents currently living in the home are being taken to day programs.

John no longer has a functioning day program, according to Christine. An Individual Support Plan (ISP) states that he lost his previous day program activities at Jewish Family Chai Works in Waltham in March 2020 because of COVID restrictions.

The ISP states that when the day program reopened on a limited basis in August 2020, John was not alowed to return to it. The ISP does not specify the reason he was not allowed to return.

Christine also said John’s physical therapy services, which he received after fracturing his leg outside his group home in 2019, have been discontinued. Yet, she said, he is still in need of those services.

Personal hygiene allegedly neglected

Christine said she often finds John’s bedroom and the bathroom in the group home to be dirty, and John is frequently unshaven and dirty when she visits him. She provided photographs of his bed, which show several damp spots that she said are urine.

She also sent a photo of what appears to be soiled toilet paper in a waste can in the bathroom. She said the toilet paper contained fecal matter.

Christine filed a complaint with DPPC on December 7 after finding Jonn sitting alone and naked on the floor of his bedroom, apparently after he slid off his wheelchair while under the care of a staff member. The complaint has been referred to the DDS area office for an administrative review, according to a letter sent by DDS to Christine on December 8.

As noted below, many of the conditions Christine described would appear to violate DDS “standards to promote dignity,” including the “opportunity to undergo typical developmental experiences.”

Christine said she believes John is declining physically and mentally in the group home and is severely depressed. “I don’t know if he’ll ever be the same person he was — energetic and engaging,” she said.

DDS doesn’t respond to concerns

On January 10, I sent an email to Joan Thompson, DDS area director, calling her attention to the apparent violations and asking that the Department investigate them.

Thompson responded the following day with a two-sentence email that did not appear to relate to my request. Thompson’s email stated the following:

After review of your request, you would need written authorization from both (co)guardians to release any information.  Without the written authorization, you do not have the authority to make such a request.

Thompson’s message wasn’t signed.

I reiterated my request in a second email on January 12 and copied Gail Gillespie, the DDS director for the Boston Metro Region. I haven’t received a response to that message from either Thompson or Gillespie.

Apparent violations of DDS regulations in group home

Christine said that after his hospitalization, John was kept for months at Tewksbury State Hospital, ostensibly for treatment of a leg injury from a fall outside his group home in 2019. But she said his leg actually got worse at Tewksbury, yet he was discharged to his group home where he now needs a wheelchair.

She said the group home staff does not appear to be encouraging John to get exercise. She added that John wants to get out of his wheelchair, but the staff are not encouraging him to do so or helping him.

When John was discharged from Tewksbury in November, the group home staff was supposed to develop a chart listing weekly activities for him. But Christine said no such chart has been developed for him.

We are concerned that this overall situation may violate a number of DDS standards to promote human dignity, including a number of the “general principles,” which state that services are supposed to be provided in a manner that promotes:

  • The opportunity to undergo typical developmental experiences, provided that the person’s safety and well-being are not unreasonably jeopardized,
  • The opportunity to engage in activities and styles of living which encourage and maintain the integration of the person in the community through individualized social and physical environments, and
  • Opportunities for daily recreational activity and physical exercise, as appropriate to the age and interests of the individual.

The apparent confinement in the group home against John’s stated wishes appears to violate additional DDS standards and other rights that are intended to promote or include:

  • Self-determination to the person’s fullest capacity,
  • Least restrictive care, and
  • The right to be visited and to visit others under circumstances that are conducive to friendships and relationships.

ISP specified activities 

John’s Individual Support Plans (ISPs) in both 2019 and 2020 discussed his enthusiasm for his day program at Chai Works. As noted, he lost that program in 2020.

John’s 2020 ISP stated that while at the day program, which he had attended since 2012, he participated in numerous activities including dance, yoga, and martial arts. He was also taken on community outings.

The 2020 ISP stated that after the day program was initially shut down in March 2020, John was able to participate in online groups connected with the program a couple of days a week for an hour or two at a time. Accoring to the ISP, John needed help logging in to the online sessions.

Christine said she was told at both Tewksbury State Hospital and at the group home that they were too short-staffed to help him log into the day program sessions. As a result, John has not been able to participate in his day program, even online, for at least the past six months, she said.

Additional conditions in group home

Christine also said that in addition to the problems with cleanliness in the home, she discovered that other residents’ laundry is repeatedly put in John’s dresser drawers even though all of his clothing is labeled.

The overall situation appears to violate the principle specifying “freedom from discomfort, distress, and deprivation which arise from an unresponsive and inhumane environment.” There also appears to be a violation of John’s additional right to “individual storage space for personal use.”

Further, according to Christine, John’s cell phones have repeatedly gone missing, first at Tewksbury and later at the group home. As a result, he is unable to make or receive calls directly from Christine or anyone else.

Christine said she has also been told not to call the group home after 6 p.m. All of that appears to violate the right of individuals to have “reasonable access to a telephone and opportunities to make and receive confidential calls…”

John’s 2020 ISP and an August 2020 staff memo noted that John liked to talk to his mother on the phone, so much so that a protocol was established to end the calls at 10 p.m.

DDS needs to change course

In my January 10 email to DDS Area Director Thompson, I requested that DDS revisit and reverse the prohibition placed on John’s visits home. As noted, I have not received a response to that email.

We are also requesting that the area office expand its review of Christine’s complaint in December after she found her son on the floor of his room. We are urging the Department to examine the overall conditions under which John is currently living and the potential violations of the Department’s regulatory standards.

Questions surround state’s abuse finding against mother who gave her son prescribed cough syrup and Tylenol

January 3, 2022 29 comments

Christine Davidson is known by her family and friends to be devoted to her 45-year-old son John, who has an intellectual disability and numerous medical issues.

“Christine is a dedicated mother who has steadfastly kept John as her number one priority,” Pat Diianni, a friend who has known Christine for nearly 40 years, wrote in a letter of support for her last year.

Pat said Christine has consistently worked over the years to ensure the best possible care for her son in the Department of Developmental Services (DDS) system.

Christine herself says John is “the focus of my life. Everyone knows that I’d go to any lengths for him.” By all accounts, John loves her equally, and has told his caregivers that he wants to be home with his mother.

Christine and John Davidson

State alleges abuse by mother and restricts contact with son

But the state Disabled Persons Protection Commission (DPPC) and DDS concluded in October that Christine abused John because she “more likely than not gave (him) an undetermined amount” of Tylenol and cough syrup with codeine while he was home with her for a weekend visit last June.

In a 20-page report, a DPPC investigator concluded that Christine also failed to provide prescribed breathing therapy support “causing (John) to lose consciousness” in the morning of June 21. The prescribed therapy was the use of a Bi-PAP breathing assistance machine at night.

Christine was unable to wake John up in the morning of June 21, and called 911. John was brought to the Newton Wellesley Hospital ER. He quickly recovered after being given oxygen.

The DPPC is a state agency that is charged with investigating abuse and neglect of adults under 60 with disabilities.

Following the DPPC investigation, DDS issued an “action plan” that recommended sharply curtailing contact between Christine and John. All visits to Christine’s home have been suspended, and all of Christine’s visits to the group home have to be scheduled and supervised, despite the fact that Christine is John’s co-guardian. John was not even allowed to go home to visit Christine at Christmas.

Questions about accuracy and completeness of DPPC report

But following a review of the DPPC report and related documents, and an interview of Christine,  COFAR is questioning the completeness and accuracy of DPPC’s investigation of the incident leading to John’s hospitalization.

Most importantly, both the cough syrup and Tylenol medications had been prescribed by John’s primary care doctor, according to Christine and to medical records, and Christine maintains that she has always followed the prescriptions.

There was no evidence presented in the DPPC report that Christine did not follow the prescribed doses in administering each medication to her son.

As for the failure to use the Bi-PAP machine, Christine says that such a machine wasn’t delivered to her house until June 22, the day after John’s episode of hypoxemia or low oxygen level. She also said she did not receive necessary training in how to use the machine. When she inquired of a group home staff member about receiving training, she said she was told there would be no opportunity for her to do that.

Christine said the machine was later removed from her home by a group home staff, and that she later saw the machine’s breathing mask on the floor of John’s room, dirty and apparently unused. She said when she brought that to the attention of the staff, they did not respond to her.

Christine’s son’s group home is run by WCI, a DDS provider.

Christine, who cooperated with the DPPC investigation, told the investigator she gave her son prescribed cough syrup over that weekend because he had a history of a chronic cough and “has a tendency to cough so much he can’t breathe.” She said she gave him Tylenol as prescribed for arthritis pain.

Following his hospitalization in June, John was admitted in early August to Tewksbury State Hospital due to continuing leg pain stemming from a fracture caused by a 2019 fall outside his group home. He was kept for months at Tewksbury State for unclear reasons, and was discharged back to his group home only at the end of November.

Since August, Christine and her partner, Carmine Tocco, have wanted John discharged home to them. John also strongly expressed his desire to the DPPC investigator to go home to his mother.

Christine and Carmine said they believe that Tewksbury State Hospital was not an appropriate setting for John, and said they have seen signs that he was neglected there and in his group home, and has suffered physical and emotional abuse.

In the 40 years of John’s life prior to his admission to the WCI group home in 2017, he had lived at home with his mother.

Mother lost sole guardianship last year

Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in a new group home.

Christine engaged Tom Frain, who is also COFAR’s president, as her attorney, and was ultimately restored to full guardianship. Her nephew, George Papastrat, who lives in North Carolina, was later appointed as co-guardian, with the medical and residential decision making powers.

We are concerned that DDS and DPPC appear to be setting the stage to remove Christine as co-guardian. Frain assisted Christine in appealing the DPPC abuse finding.

Friends, colleagues, and family cite mother’s devotion to her son

Amelia Lawless, Christine’s sister, stated in a letter of support for Christine in June 2020, during her fight to regain her guardianship, that, “(John) and his mother are a real team – they cry, laugh, and work well together. You might say that they complete each other.”

That same month, Rachel Geller, a former behavioral specialist in the Waltham Public School District, noted in a letter that Christine had worked in the school district as a special education teacher, and described her as “enthusiastic, kind, and loving…There are many wonderful teachers. Ms. Davidson stood out,” Geller stated.

Geller added that, “I have found Ms. Davidson to be sincere, hard-working, diligent, and of high moral and ethical standards.”

Father Fred Mannara, who was Christine’s parish priest for 57 years, wrote that, “John has a person in his life, his mother, who knows him and shares his history and loves him dearly. John knows that he belongs.”

Denise Cerrati, another friend of Christine’s for more than 40 years, wrote that, “John is the remarkable, resilient young man he is because of his mother’s care and undying attention to his needs… It would be a great injustice to restrict John’s life in such a way as to not allow him to draw on the strength and love he has always known.”

Milestones in advocacy for John

A former Special Education teacher in the Waltham school system, Christine enrolled John in an Early Intervention program at the Shriver Center prior to preschool, and later enrolled him at the LABB Educational Collaborative from which he graduated in 1998.

Christine found a speech therapist and reading tutor for John when he was an adolescent. She arranged for swimming lessons for him and watched him win two gold medals in an 800-meter swimming event at the Special Olympics International Games in 1991.

Christine encouraged John’s love for dance; and John performed for several years at a local dance studio.

In addition, Christine arranged for John to work at Brandeis University in a paid job in maintenance that lasted for 13 years.  And she found a volunteer position for John with Chai Works in Waltham, a program for persons with developmental disabilities. “He was very proud of that job,” she said. “He never missed a day.”

John also helped Christine in campaigning for Joe Kennedy II in his run for Congress in her Waltham district in the late 1980s.

In 2009, Christine began working with a priest to arrange for a special dispensation to have John receive the sacrament of confirmation as an adult. He was confirmed in 2014.

Christine was also a frequent speaker at family events organized by the Greater Waltham Arc. The Arc sponsored the Brandeis job that John held, starting in 1998. When that job lost funding at Brandeis, Christine contacted Waltham city officials who were able to find the funding needed to keep the job going.

No conclusive cause determined for hypoxemia

Doctors at Newton Wellesley Hospital who were interviewed by DPPC did not appear to have provided the investigator with a conclusive cause of John’s episode of hypoxemia on June 21.  One doctor stated that John may actually have been aspirating when he was brought to the hospital, meaning he was actually choking on something.

We have seen a number of cases in which individuals have aspirated or choked on ingested objects for a period of a week or more before being taken to a hospital. Christine said she thinks it is possible that her son was aspirating on something he had ingested while at his group home before his visit home to her.

While the DPPC concluded that John’s hypoxemia was more likely than not caused by a combination of Tylenol, cough syrup, and lack of a Bi-PAP machine, the report specifically concluded that the amount of the two medications given to John was “undetermined.”

In an appeal filed with the DPPC on November 29 of the agency’s abuse finding, Attorney Frain stated that it is Christine’s position that “the preponderance of evidence does not support the conclusons reached by the investigation report.”

Questions about enlarged liver

One Newton Wellesley hospital official told the DPPC investigator that Christine’s son had an enlarged liver, which was likely caused by a drug toxicity. The official said, however, that John’s Tylenol levels were not elevated when he was examined at the hospital.

Nevertheless, the hospital official said that toxicity in John’s liver could be due to small amounts of Tyleol built up over time. The official stated, “I have every suspicion that (John) took too much Tylenol, but I wouldn’t go to court to testify on that.”

But given that Christine’s son had only been with her over the weekend of June 18 to June 21, when he was hospitalized, Christine said she thinks it is possible that any toxicity buildup in his liver from Tylenol use could have happened previously at the group home. The DPPC report did not mention that possibility.

Witness confirms John had chronic cough

An official from Brigham and Women’s Hospital confirmed to the DPPC investigator that John had had “a chronic intermittent cough for many years.” The hospital official also said that John’s “cough syrup prescription had not raised many concerns prior to latest hospitalization.” Christine said she knows of no concerns that were ever raised about it.

Charge that Christine didn’t know dosages lacks specifics

Much of the case for the DPPC’s abuse charge appears to rest on accounts by the unnamed Newton Wellesley Hospital personnel that Christine couldn’t remember the dosages of the cough syrup and Tylenol that she had given John.

But even if that were the case, Christine maintains it would not prove that she had given her son too much of those medications. She told the DPPC investigator that she has always followed the doctor’s prescriptions regarding medication that she has given her son.

Christine said that she volunteered information to the EMTs who answered her 911 call about the medications John was taking, and gave them a list of all of his medications. She said that she has been giving John his medications throughout his life, and has always followed the written prescriptions.

John’s cough syrup and Tylenol had been prescribed

John’s cough syrup and Tylenol had, in fact, been prescribed for him, according to medical records examined by COFAR.

Those medical records were apparently not reviewed by the DPPC investigator who indicated in the report that the only medical records reviewed were Newton Wellesley Hospital records and John’s Individual Support Plan. [DPPC regulations (Section 1(k) of 118 CMR 5.02) require “the review and obtaining of copies of all documents which are not plainly irrelevant to the matter under investigation.” (My emphasis.)]

According to the records reviewed by COFAR, Tylenol and Tussionex cough syrup containing Hydrocodone were prescribed for John going back as far as January 2020.

Frain stated in his appeal that the cough syrup with Hydrocodone had been prescribed for the past 15 years, and had been administered by Christine to John since that time without incident.

Frain also noted that the DPPC report did not make clear that there were actually two prescriptions for the cough syrup for John. One — Mucinex DM Max Strength — was used by the group home, and the other — Tussionex with Hydrocodone — was used by Christine.

Frain said the reason for the separate prescriptions was that no cough syrup with a narcotic could be safely stored or administered in the group home. But that confusion was used by the DPPC report, Frain said, “to insinuate that there was wrongdoing on Ms. (Christine) Davidson’s part.”

Bi-PAP machine was not used by the group home

The DPPC report stated that the Bi-PAP machine had been prescribed for John to use at night to help him breathe. John had been diagnosed with severe apnea, according to the report.

As noted, Christine said the Bi-PAP machine was not delivered to her home until after John’s hospitalization, and that the group home later removed it.

The report did note that while it appeared the group home did have a B-PAP machine for John, the staff rarely if ever used it. The Brigham and Woman’s Hospital official told the investigator that:

I’m not sure you can blame this (failure to use the Bi-PAP machine on (Christine). Some sleep doctor must have prescribed it years ago. (John’s) usage has been spotty forever…I don’t think the group home even used it…

John could not be awakened previously

In his appeal of the DPPC report, Frain noted that in two previous incidents in the months prior to June 21, John was found non-responsive. In those incidents, on February 17 and during the “April/May time frame,” John was in the care either of his group home or a medical provider. Yet no report of abuse was filed with DPPC or DDS.

In the February case, medical staff at the Mass General Infusion Center in Waltham noted in on a medical form that John was “very sleepy in infusion…Quite lethargic.”

The DPPC report did not mention either of those previous incidents, either or both of which Christine believes could have a bearing on the cause of the incident in June.

No reaction to Narcan

According to the DPPC report, when EMTs arrived at Christine’s home on June 21, after Christine found John unresponsive, they administered Narcan “without effect.” Narcan is a medication used to counteract decreased breathing in an opioid overdose.

The report didn’t discuss whether John’s lack of reaction to Narcan might rule out the cough syrup as a cause of his hypoxemia. Narcan will not have an effect if there is no opioid in a person’s system.

Disputed statements about leg injury and air mattress

Also in the DPPC report is a statement by John’s DDS service coordinator that John had previously broken his leg while in Christine’s care.

The report, however, stated that in a follow-up interview to “clarify” that charge, the service coordinator acknowledged that Christine’s son had broken his leg in December 2019 when he slipped and fell outside his group home after direct care staff failed to greet John as he arrived with a transportation provider. It is undisputed that John was in WCI’s care at the time, and not under his mother’s care.

The report further stated that the incident in which Christine’s son broke his leg was not reported to DPPC because “the incident was witnessed and no one appeared at fault.” The investigator didn’t question that apparent breach of DPPC’s reporting statute and regulations.

According to the report, John refractured his leg in February 2020, possibly while at Christine’s home. However, the report stated it could not be determined whether that second fracture was due to a fall or to failed hardware in his leg stemming from the repair of the first facture.

Christine and Carmine also dispute an apparently second-hand claim in the report, apparently by the service coordinator, that in February 2020, an unidentified person had seen John sitting on a deflated air mattress on the floor in her home. Christine and Carmine said that not only does her son have an upstairs bedroom with a bed in it, but they put a second bed into a downstairs bedroom for him because he was having trouble walking.

Christine said she has never had an air mattress in her home. Carmine sent us the photo below of Christine’s son’s downstairs bed.

John Davidson’s downstairs bed in Christine’s home. John’s DDS service coordinator implied to the DPPC that John had been forced to sleep on an air mattress.

The investigator acknowledged in her report that she had not visited Christine’s home, citing COVID restrictions.

DPPC report relied on negative speculation about personality

In addition to accounts from the unidentified Newton Wellesley Hospital personnel, assertions about Christine’s temperament were included in the report from John’s DDS service coordinator, a DDS program monitor, and a DDS area office nurse. Only one staff member of his group home was interviewed, and that interview does not appear to have been about Christine’s alleged behavior toward the group home staff.

The service coordinator, for instance, described Christine in the report as “crafty and manipulative.” No example of that is given.

COFAR has in the past found that in investigating allegations of abuse, DPPC and DDS have discounted information provided by family members of clients. In some cases, the agencies have made negative assertions or taken punitive or even retaliatory actions against family members seen as meddlesome or too aggressive in their advocacy for their loved ones. (See here, here, herehere, here, here, here, here, here, and here.)

Assessed as frail and elderly

At least one of the Newton Wellesley Hospital personnel and Christine’s service coordinator described Christine to the DPPC investigator as “frail,” while the service coordinator also described her as “in her mid-70s and elderly.” The Newton Wellesley Hospital official also said Christine was using a wheelchair in the hospital.

Christine responded to us that she used a wheelchair temporarily in the hospital because she was recovering from back surgery at the time. She said she no longer uses a wheelchair. She added that she resents being characterized as frail, in particular. “It’s like calling someone fat or too skinny,” she said. “They don’t want me in the picture. They don’t want my involvement in John’s medical care.”

Staff actually rude to Christine

In her own contemporaneous handwritten notes, Christine wrote that on July 29, staff in John’s group home were “ rude” to her, and that one had “abruptly snatched snack from my hand.” She said she had brought the snack of yogurt and lemonade to give to John. She also wrote that the staff were giving him “no choice in (TV) channels.”

On July 30, she wrote that, “John’s bed, blanket, and pillow soaked with urine.”

In early August, she wrote in her notes that, “I would be remiss not to speak up for him — elderly and disabled have no voice.”

Christine praised staff member in notes

Despite the negative assessments of Christine’s relationship with the group home staff, her written notes from July 8, 2019, include praise for a staff member named Mohammed. In her notes, she stated after Mohammed’s name: “Humor attention to detail, kindness empathy, helped John shave.” Christine said Mohammed left the group home more than a year ago.

Visits with mother considered a negative

The DDS program monitor indicated to the DPPC investigator that both DDS and the provider thought Christine was visiting her son in his group home and taking him home for visits too often. “Weekend visits would turn into weeks,” the DDS official said. “(John) couldn’t gain a foothold in the group home.”

“We have been walking a fine line and have done everything we can do,” the DDS official said. (Christine) will always find a reason to bring (John) home.”

The DPPC report, however, includes no reasoning or discussion as to why frequent visits and contact with John’s mother would necessarily be bad for him. DDS regulations, in fact, support “least restrictive care” options, meaning options that honor the wishes of clients to interact with family, friends, and the greater community.

DDS regulations (115 CMR 5 et seq.) also state that “Arrangements shall be made for private visitation (of DDS clients) to the maximum extent possible.”

Report acknowledges son’s wish to return home

The service coordinator stated to the DPPC investigator that Christine and her “family attorney (Frain) have lost sight of (Christine’s  son’s) individual rights.”

Ironically, the DPPC investigator stated that when she interviewed John, he expressed a strong desire to go home from Tewksbury State Hospital to his mother. There was no discussion in the report about taking his wish into account.

Lack of contact, communication

Christine maintains that while John was at Tewksbury State Hospital, her contact with him was sharply constrained for unclear reasons. While she was allowed to visit him there, she said the visits were supervised and she was not allowed to ask him or the staff questions.

She also said John’s cell phone went missing almost immediately after his admission to Tewksbury, and she was unable to call him. She said the DPPC investigator never asked her about that situation.

Neglect alleged at Tewksbury Hospital

Christine and Carmine said that when they initially visited John at Tewksbury, he was wearing diapers with feces in them and hadn’t been shaved for at least a week. Also his glasses and cell phone were missing. They said he appeared at times to be drugged there, and his leg pain was continuing.

Christine believes John regressed regressed mentally and was depressed at Tewsksbury and is continuing to decline mentally and physically at his group home. She said he is now in a wheelchair and is incontinent. Prior to his hospitalization, she said, he was continent and able to walk with a cane.

DPPC should reverse abuse finding

We hope the DPPC reconsiders its finding of abuse against Christine for all of the reasons discussed above. We also hope that DDS reconsiders its restrictions imposed on contact between Christine and her son.  It appears to be very important to John – and witnesses have attested to this – that he be afforded the contact he desires with his mother.

We also think both DDS and DPPC should investigate the care and conditions under which John was kept at Tewksbury State Hospital. A similar investigation should be undertaken at the WCI group home.

Christine and Carmine believe that with adequate assistance from DDS and caregivers, they can care for John at home. “He will receive the love, care, and stimulation he needs that only we can provide if he is allowed to come back home,” Christine said. “Right now, I’m very concerned that he is progressing into a state of despair, which is the last stage of depression.”

We hope DDS seriously considers the option of returning John home to Christine.

Family doctor opposes DDS’s continuing effort to remove mother as co-guardian of her son

November 16, 2021 8 comments

The primary care doctor for the past eight years of a man with an intellectual disability is voicing opposition to a continuing effort by the state to remove the man’s mother as his co-guardian.

For more than a year, the Department of Developmental Services (DDS) has, for unclear reasons, been seeking the removal in probate court of Cindy Alemesis as co-guardian of her son Nick. That is despite the fact that Cindy appears to have saved her son’s life in 2018.

In a letter intended to be submitted to the probate court, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he has “witnessed how Cindy cares for Nicholas over the years.

“She (Cindy) is very active in his care, concerned for his well-being, makes sure he does not miss medical appointments, and has always acted in the best interest of her son,” Dr. Ahmed wrote in the letter, dated November 9. He added, “I am confident that removing Cindy as co-guardian of her son will not be in the best interest of Nicholas.”

Cindy was the first to notice how ill her son was in December 2018, and got him to a hospital for lifesaving treatment after his group home staff missed a critical medical appointment for him with Dr. Ahmed.

Nick, who is 29, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Staff in Nick’s group home in Dracut failed to take him for a scheduled morning ultrasound appointment with Dr. Ahmed on December 19 of 2018. The ultrasound would likely have shown that Nick’s brain shunt was leaking spinal fluid into his stomach.

DDS’s only stated reason in its petition for Cindy’s removal, which was filed in October 2020, was that she had made decisions that were not in her son’s best interest. The Department’s petition did not say what those decisions were.

Nick and his mother, Cindy Alemesis

Eight months at Mass. General Hospital

In a previous letter, which Dr. Ahmed wrote following Nick’s hospitalization in 2018, he stated that he had examined Nick on December 17 of that year, two days before Nick fell ill.

During the December 17, 2018, visit, Dr. Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m. Dr. Ahmed’s letter added that, “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, Dr. Ahmed said Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, Nick fell ill during a church service in the evening of December 19. During the ride back home in a church van, Cindy insisted that Nick be taken to Lowell General Hospital. There, doctors found that the shunt was leaking spinal fluid into his body. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was transferred to Mass. General Hospital. He remained there for eight months during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Staff missed medical appointments

After Nick’s recovery and release from the hospital in July 2019, Cindy  regularly complained that staff in the group home, run by LifeLinks, a provider to DDS, were continuing to miss medical and dental appointments for him.

In his November 9 letter in the case, Dr. Ahmed stated that “Nicholas has missed doctors appointments. Cindy notices the missed appointments and advocates for her son.”

Cindy filed a complaint in October 2020 with the Disabled Persons Protection Commisson (DPPC), alleging that the group home was continuing to miss medical appoints for her son. But DPPC screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form stated that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

Cindy said that during the past year, her contact with her son has remained sharply restricted by DDS and the provider.

DDS guardianship removal petition raises question of retaliation

In 2019, Cindy had sought to remove the other appointed co-guardian for Nick. That co-guardian is paid by DDS, according to DDS records. Cindy maintains that the other co-guardian has been uninvolved in Nick’s care and lives in Florda. Cindy’s effort in court to remove the other co-guardian was unsuccessful.

That previous court battle, however, raises a question whether the current effort by DDS to remove Cindy as co-guardian is being done in retaliation.

A pre-trial conference in the case has been scheduled for December 15 by Probate Court Judge Melanie Gargas.

We are continuing to advocate on behalf of Cindy, and we intend to join with Dr. Ahmed in stating to Judge Gargas that Cindy has always acted in her son’s best interest and should not be removed as his co-guardian.

As we have noted in the past, this case fits a pattern in which DDS and providers have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

It is unfortunate that DDS has dragged out this case as long as it has. The Department’s effort to remove Cindy as her son’s guardian and the restrictions placed on her contact with her son have placed unimaginable stress on her. Those restrictions have also hampered Cindy’s efforts to advocate for the best possible care for Nick.

We urge DDS to drop its effort to push Cindy out of her son’s life, and to begin to work with Cindy to rectify the problems she has identified with her son’s care in his group home.

 

 

 

Video has a controversial and disturbing, but important message about autism

October 8, 2021 4 comments

Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.

The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.

The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.

Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”

The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.

It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.

As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”

And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.

But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:

When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.

What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.

We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.

Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.

Attacks on guardianship

The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). SDM is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, and living arrangements, and in other areas.

In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.

Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:

People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.

Integrated employment

The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.

The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.

It’s all about money and privatization

The ideological position that the community-based system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.

But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”

As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.

The Britney Spears case is wrongly being used to attack guardianships of persons with developmental disabilities

September 7, 2021 7 comments

In a recent article published in CommonWealth magazine, we discuss the misguided use by many activists of Britney Spears’ controversial guardianship case to discredit guardianship arrangements in general.

As we point out in our article, guardianship is under attack, and the Britney Spears case is wrongly being used to imply that all guardianship arrangements are abusive or exploitative.

We think Spears’ experience is also being used to advocate for legislation that could make it more difficult for family members to become or remain as guardians of persons with intellectual and developmental disabilities (I/DD). In our experience, family members need to have guardianship to ensure they are consulted in the delivery of care and services to their loved ones.

But former Massachusetts Attorney General Scott Harshbarger and former Secretary of Elder Affairs Paul Lanzikos appear to be using the Spears case to push for bills that might limit those family guardianship rights. Citing Spears’ case, Harshbarger and Lanzikos have proposed legislation to create a Massachusetts Office of Adult Decisional Support Services (H.1898 and S.974).

The functions of the Office, as listed in the legislation, are vague; but Harshbarger’s and Lanzikos’s own statements in a separate piece in CommonWealth raise concerns for us about what their proposed Office might be tasked to do.

Harshbarger and Lanzikos wrote that the Office would “improve oversight and best-practices in guardianship and conservatorship, as well as support alternatives to guardianship—such as supported decision-making—statewide” (my emphasis). More about Supported Decision-Making in a moment.

We certainly agree that there are compelling questions as to why someone like Britney Spears remains under guardianship, also known in some states as conservatorship. She is a multi-talented singer, songwriter, dancer, and actress who appears to be involuntarily trapped under the guardianship of her father. She appears to be cognitively normal and capable of making her own life choices.

But not all guardianship arrangements are like Spears’ relationship with her father, and not all persons under guardianship are capable of making their own life choices. Yet that is one of a number of distinctions that appear to be lost or glossed over in Harshbarger’s and Lanzikos’s piece.

Harshbarger and Lanzikos aren’t the only ones using the Spears case in this manner. Activitists around the country and even some members of Congress are using Spears’ experience to attack guardianship.

Supported Decision-Making needs safeguards

Supported Decision-Making (SDM) is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to help them make decisions about their care, finances, and living arrangements, and in other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.

We think SDM can hold promise for some high-functioning individuals; and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.

The problem with proposed legislation to implement SDM in Massachusetts (H.272 and S.124) is that, as with earlier versions of the legislation, there appear to be few, if any, such safeguards in it. The bills still provide no standard for determining who might be eligible for SDM.

The SDM legislation continues to avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents need to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.

We are concerned that the creation of the Office of Adult Decisional Support Services may be a backdoor means of instituting SDM in Massachusetts as an “alternative” to guardianship.

As noted, the duties of the proposed Office of Adult Decisional Support Services are vague, and “decisional support services” are not even defined in the legislation. The Office would be tasked with “developing oversight and accountability procedures to prevent potential errors or abuses by decisional fiduciaries.”  We think better oversight and more accountability are needed in the probate system; but it is unclear what the proposed Office would consider to be abuses.

We have identified what we think are abuses, including the incentives the probate court system in Massachusetts gives to professional guardians to acquire as many wards as possible while doing little to represent them. This raises another distinction that Harshbarger and Lanzikos appear to have failed to make.

Abuses primarily appear to lie with professional guardians

Harshbarger’s and Lanzikos wrote that they are trying “to raise public awareness around guardianship and conservatorship practices that were brought to light by the Spears case, and to provide systems to protect the rights of individuals from the risks of overreaching, or in isolated cases, outright abuse (by) guardians or conservators.”

In our experience, the overreaching that they refer to applies much more commonly to professionals hired to serve as guardians than it does to family members.

Professional guardians of persons with development disabilities are paid by the state Department of Developmental Services (DDS) — a situation that appears to interfere with the guardians’ legal obligation to act in the best interest of their disabled clients. Family members are not paid for serving as guardians of their loved ones.

We have found that professional guardians of disabled clients often have relatively few interactions with their clients, and frequently side with DDS when family members have gotten into disputes with the agency over the care of those clients.

Need for family rights bill

We think reform of the probate system in Massachusetts is needed, and a first step would be passage of H.1733, a bill which would require that probate court judges consider parents of individuals in the DDS system to be suitable guardians for them. In too many instances, DDS officials, clinicians, providers, and probate judges dismiss families as uninformed or meddlesome.

But we have seen time after time that it is family members who have their loved ones’ best interest at heart. Family members are often the ones most intimately knowledgeable about their physical and emotional conditions.

A serious discussion of guardianship reform is sorely needed. But, as we noted in our article, the proposal from Harshbarger and Lanzikos appears to be one-sided. Basing their proposal on the Britney Spears case is a key indication of that.

Stan McDonald, who fought for guardianship and visits from his son, dies

Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.

We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).

Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn. 

Stan, Andy, and Ellen in 2012

In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.

In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.

In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen.  Their claim appears to be backed up by the district court record and a subsequent police report.

The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen said the punch was accidental.

Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans.  He was described in one care plan as “kind and friendly to others,” and as “a polite man.”

While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”

We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.

Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.

Successful advocacy for Andy

While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.

Supporters urge restoration of Stan McDonald’s guardianship of Andy

In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. 

Guardianship bill

H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.

The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.

If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.

In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).

DDS seeks to remove mother as co-guardian of her son after she saves his life

November 12, 2020 51 comments

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.

Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Nick Alemesis and his mother, Cindy

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home.  She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

Cindy said the other co-guardian for Nick, who is apparently paid by DDS, appears to live in Florida, and has been uninvolved in Nick’s care. Cindy sought unsuccessfully to remove that co-guardian last year in probate court.

It isn’t clear whether the current move by DDS to remove Cindy as co-guardian is in retaliation for her attempt to remove the other co-guardian. It is also unclear whether DDS wants to make that individual Nick’s sole guardian.

I emailed a request for comment on this matter on Tuesday (November 10) to DDS Commissioner Jane Ryder, and to Barbara Green Whitbeck, DDS assistant general counsel. Whitbeck signed the Department’s petition to the probate court to remove Cindy as co-guardian. Neither Ryder nor Whitbeck has yet responded to my request for comment.

Support from church pastor 

Keith Phemister is pastor of the Lighthouse Baptist Church in Hudson, NH, which Cindy, her husband, and Nick have attended for the past 20 years.

Phemister strongly supports Cindy’s remaining as Nick’s co-guardian, and said he is baffled by DDS’s claim that she hasn’t made decisions in his best interest.

Phemister said Cindy can be abrasive at times, and that he has spoken to her about it. But he maintains her abrasiveness is because she feels that her son is being mistreated, and that she sometimes will speak her mind without thinking about how others might react.

“I know she (Cindy) is fighting for her son,” Phemister said. “It’s possible they (DDS) see that as a negative, but she loves her son and is fighting for him, and they’re holding that against her.”

Phemister said that on the evening Nick got ill in December 2018, Nick had attended Wednesday church services with Cindy. The church has a van that picked Cindy up from her home in Lowell, and picked up Nick from his group home in Dracut, and took them to the church in Hudson, NH. After the service, Nick started feeling ill, and was sweating and vomiting on the van ride back to Dracut.

Phemister said Cindy was so concerned, she had them detour and take Nick to Lowell General Hospital. Nick was later transferred to Mass. General. Phemister said the medical staff apparently told Cindy that Nick would have died had he not been brought to the hospital that day.

Cindy at Nick’s bedside in the hospital

Doctor stipulates to missed ultrasound appointment

In a written statement, Zaheer Ahmed, a doctor of internal medicine based in Lowell, said he examined Nick on December 17, 2018, two days before Nick fell ill and was taken to Lowell General.

During the December 17 visit, Ahmed scheduled an ultrasound of Nick’s abdomen for two days later — December 19 at 10 a.m.

Ahmed’s statement added that “the patient and care worker were both informed of (the) appointment before leaving the office on that date.”  However, the doctor’s statement says Nick didn’t show up for the December 19 appointment, and the ultrasound had to be rescheduled for December 21.

However, by then it was too late. Nick fell ill during the church service in the evening of December 19. During the ride back in the van, Nick was first taken on Cindy’s insistence to Lowell General Hospital. He was transferred a few hours later to Mass. General.

A document from Mass. General shows Nick was admitted on December 20 with fever, nausea, vomiting, lethargy, and abdominal pain. That was the start of an eight-month stay in the hospital.

At Mass. General, Nick had 13 operations to remove and replace the shunt in his brain, and seven procedures on his throat due to an infection caused by his trach tube, Cindy said.

According to the Mass. General document, Nick also underwent a subsequent operation for a perforated bowel caused by a piece of the infected shunt.

DDS and provider apparently failed to report hospitalization

Given Dr. Ahmed’s written statement regarding the missed ultrasound appointment, the LifeLinks staff were knowledgeable and responsible for bringing Nick to the appointment, and failed to do so – a potentially negligent act that could well have cost him his life.

Cindy said she immediately reported those circumstances to officials at DDS. It appears, however, that neither the provider nor DDS reported the matter to the Disabled Persons Protection Commission (DPPC), as required by the DPPC’s enabling statute and regulations. As a result, DPPC never investigated the matter or authorized DDS to investigate it.

In response to a query from Cindy earlier this month, DPPC responded that it had received no complaint report involving Nick’s hospitalization until Cindy herself filed a complaint about it last month.

The DPPC’s statute and regulations state that “mandated reporters” must report any situation resulting in a serious physical injury if there is reasonable cause to believe it was due to abuse or neglect.

Missed appointments continue

Cindy said she has been frustrated that the group home staff continued to miss appointments for Nick, even after his release from the hospital in July 2019.

A written statement from Jonathan Moray, a doctor with New England Neurological Associates of Lawrence, stated, for instance, that Nick missed an appointment on November 27, 2019, just a few months after he got out of the hospital.

A written statement last year from Tufts Dental School states that they could not schedule any further dental appointments for Nick “due to lack of updated medical paperwork.” That paperwork is required to be updated yearly, and nothing was on file since 2017, the Tufts letter stated.

Cindy said Nick’s teeth are still damaged from a trach tube that was inserted during his hospitalization.

DPPC screens out recent complaint

Unable to get an adequate resolution to her concerns about the missed appointments, Cindy filed the complaint last month with DPPC. But the agency screened out that complaint as ineligible for an abuse investigation, and instead referred it to DDS for an “administrative review.”

The DPPC intake form states that Cindy’s complaint was screened out because Nick had not suffered a serious physical or emotional injury. However, that same DPPC intake report acknowledged that one of the alleged missed appointments had led to Nick’s hospitalization for eight months.

DDS attorney threatened to take away co-guardianship in 2019

Cindy said Barbara Green Whitbeck, the DDS assistant general counsel, first threatened to take away her co-guardianship of Nick last year, and accused Cindy at the time of trying to improperly feed Nick while he was hospitalized. Cindy denied that she ever fed Nick improperly.

Whitbeck has represented DDS in the ongoing probate court fight in which Cindy had sought to remove the DDS co-guardian. Cindy said that when she informed Whitbeck during a private meeting of her concerns about the other co-guardian and the alleged negligence of the provider, Whitbeck dismissed those concerns.

“She (Whitbeck) said the (LifeLinks) staff did nothing wrong,” Cindy said. “Then she accused me of feeding my son and keeping him sick in (Mass. General).” Cindy said she got up at that point to leave the meeting, and Whitbeck threatened her, saying if she left, she would lose her co-guardianship.

Cindy said the charge of improperly feeding Nick was untrue and “came out of left field.”

Cindy said that while she was at Nick’s bedside in the hospital, the nurses trained her in how to suction his trach tube and how to put his medication, which was crushed up in a type of pudding, into his G-tube. His trach had to be sanctioned every 20 minutes or so, she said.

Cindy feels Nick is continuing to be isolated in his group home

Cindy said Nick’s phone was recently taken away from him, and that he has had few social interactions since March. Before that, his church was his main source of social interaction.

Currently, Cindy’s contact with her son is restricted by the group home to once a week. Her phone contact with him is also apparently highly restricted. She was told in March that no in-house visits were permitted because of the COVID crisis, but said no one informed her that in-house visits were restored as of early October under revised DDS guidelines.

In an email on Oct. 8, Cindy complained to Nick’s service coordinator that the group home staff told her not to call Nick, and didn’t give her a reason for that. She said she sometimes goes for three to five days without hearing from him.

Cindy said those restrictions on contact have made it harder for her to keep track of the care Nick is receiving, and to monitor his medical needs. She said that when she called the house earlier this week to ask permission to visit her son, a staff member hung up on her.

Case fits a pattern

Unfortunately, this case fits a pattern we have seen in which DDS and sometimes providers themselves have taken a variety of punitive and retaliatory actions against family members and guardians when they are seen as troublesome or meddlesome in advocating for adequate care for their loved ones in the system.

Guardians, parents, and other family members can suddenly find their contact with their loved ones restricted or banned entirely, and their guardianship placed in jeopardy. They are frequently either ignored or threatened with punitive actions if they don’t agree to accept the providers’ decisions on care and services without complaint. (Examples of this are here, here, here, here, here, here, here, here, here, and here.)

Without an attorney, family members and guardians can find themselves badly outmatched and outgunned by DDS’s extensive legal resources, particularly in probate court. The system is entirely unfair and designed to bully families into submission.

It shouldn’t have to be this way. We strongly hope that Cindy prevails in her battle to keep her guardianship, and will do everything we can to help her. But it will likely be an uphill battle.

What you can do

We urge people to call DDS at 617-727-5608 and ask to leave a message with the commissioner in support of Cindy remaining as her son’s co-guardian.

Also, please call your local state legislators (you can find them here), particularly if you live in the Lowell and Dracut areas, and ask them to contact DDS on her behalf. And please share this post on Facebook and other social media.

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