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DDS client removed against her will from shared-living home in alleged retaliation for reporting abuse

July 26, 2022 3 comments

It was on a Monday in May that Mercy Mezzanotti, a client of the Department of Developmental Services (DDS), was taken against her will from the home of Karen Faiola, with whom Mercy had been living for four years.

The person who came to take her worked for Venture Community Services, a nonprofit contractor to DDS. Up to that time, Venture had been paying Karen to provide shared-living services in her home to Mercy.

“I told them (the Venture employee and later other managers of the corporation) this is against my human rights,” Mercy said in a phone interview. “I’m my own guardian. I’m not going along with this. But they wouldn’t tell me anything. This should be under investigation.”

Both Mercy and Karen contend that Venture was retaliating against them because they had complained to managers of the organization in April that two of its employees had been verbally abusive toward Mercy.

Karen Faiola (left) and Mercy Mezzanotti

Mercy, 47, has a mild intellectual disability. As she put it, she has “trouble processing certain things.” But while she attended special needs classes in her school district as a child, she took mainstream classes in English and consistently made the honor roll. “I constantly studied,” she said. “I loved school.”

As her own guardian, Mercy has full legal authority to decide where to live, as well as to make other major life decisions. In our view, Venture’s alleged action to remove her from her home against her will was arbitrary if not unlawful.

Mercy and Karen said that the Venture employee drove Mercy on May 23 from Karen’s home in Sutton to the home of a family in Worcester that Mercy didn’t know. She said none of the people in the home spoke English. The next two days and nights were filled with anxiety and emotional trauma for her, Mercy said.

“I thought I would never see my home and Karen and my two cats that I love again,” she said.

Karen said that she conferred with Mercy’s private therapist after getting calls from Mercy saying she wanted to come home. She said the therapist maintained that Mercy had the right to make that decision; so Karen picked Mercy up on May 25, and drove her back to her home.  She said Mercy told her that she no longer wanted to have anything to do with Venture or its employees.

Venture stops payments

On May 23, the same day that Mercy was removed from Karen’s home, Venture notified Karen that they were terminating her shared-living contract to care for Mercy in her home. Karen said DDS officials have subsequently refused to act on her request that her contract be referred to another shared-living manager. She said the organization she suggested to DDS is located near her house and is one that she has experience with.

As a result of the contract termination, Karen said, she has not been paid since May for caring for Mercy in her home. She said that she nevertheless intends to keep Mercy there as long as Mercy wants. “I’m not going to allow anyone to take Mercy to any place she doesn’t want to be,” Karen said.

Under Mercy’s shared living arrangement, DDS had paid Venture to contract directly with Karen for providing residential services to Mercy. Karen said Venture paid her $2,882 a month under the contract.

“Karen has helpd me grow and see my potential and find a voice,” Mercy said. “I feel confident speaking to people.” She said Karen regularly takes her to doctors’ appointments, for pedicures, and to visit her father and a friend of hers.

Mercy added that she and Karen have gone hiking together and go shopping together. She said Karen makes her meals and helps here take care of her cats, while she takes the trash out. “I love Karen,” she said. “She’s  such a dream, such a great person.”

No written reason given in shared-living contract termination notice

Karen said a Venture employee alleged in a Zoom meeting with her and other provider personnel on May 19 that Mercy was going to be removed from her home because she had neglected to take Mercy to doctors’ appointments for the previous three years. Karen said this charge was untrue; and she provided COFAR with a doctor’s summary indicating that Mercy’s doctors’ visits and medications were up to date as of March of this year.

In a May 23 letter to Karen, Dorothy Cote, executive vice president and CFO of Venture, gave notice of the termination of Karen’s shared-living contract, but did not include a reason in the letter for the termination.

Cote’s termination letter cited a provision of the contract, which stated that Venture “may terminate (Mercy’s) placement upon due cause, a suspicion of due cause, abuse or neglect.”  The letter also said Mercy could be removed from the home  “pending the outcome of an investigation.” The letter, however, did not allege due cause, abuse or neglect against Karen. Cote’s letter also did not indicate that an investigation of any kind was pending.

If Venture officials did believe Karen had been neglectful in her role as a caregiver, there appears to be no indication that anyone reported an allegation against Karen of omission of care to the Disabled Persons Protection Commission (DPPC), as they would have been required to do.

Retaliation alleged for reporting abuse

Both Mercy and Karen contend that the sudden removal of Mercy from Karen’s home and termination of Karen’s contract were acts of retaliation by Venture against the two of them.

Karen said Mercy had been living with her for the past four years without incident. But she said that a number of months ago, there were changes in management at Venture, and problems began to develop with the new personnel. One of those new employees, she said, was assigned as a job coach to Mercy.

Mercy maintained that the job coach often harassed her at her job at a Papa Gino’s restaurant by mocking her work ethic. In one instance, in April, she said, the job coach suggested to the Papa Gino’s manager that she should fire Mercy. In another instance, she said, the job coach threatened not to drive Mercy home from work.

Karen said that in addition, a Venture service coordinator assigned to Mercy further abused her emotionally by threatening to remove her from Karen’s home.

Karen said she reported the incidents to a supervisor at Venture, and that led to the removal of Mercy from her home.

Therapist corroborates claims of emotional abuse

Grishelda Hogan, a licensed clinical social worker, has been Mercy’s therapist since 2019. In a July 21 email to Mercy and Karen, Hogan wrote that Mercy had “expressed consistently that she was happy in her home (with Karen)…It was clear in therapy,” Hogan stated, “that (Mercy) was making great strides in her life and I was able to see her self-esteem and self-worth develop as she finally felt seen and heard.“

Hogan stated that Mercy “had been reporting ongoing concerns with her Venture job coach. She reported feeling trapped and unsupported…” Hogan added that Mercy felt she had been lied to, and that the job coach had violated her privacy by talking to another individual on the phone about Mercy’s personal information. She said she passed her concerns on to DDS.

Hogan stated that she contacted Mercy’s DDS service coordinator after she learned that Mercy had been “abruptly moved from her home without warning or discussion despite being her own guardian.

“I shared that Mercy was reporting intense anxiety, difficulty sleeping, feeling sad and defeated, missing her home and her cat and her shared living monitor (Karen),” Hogan stated in her email to Karen and Mercy. “She was reaching out to me consistently asking for help and advocacy to get home.”

Hogan said the service coordinator told her she didn’t know the reason Mercy had been removed from her and Karen’s home. Hogan said Mercy had told her neither Venture nor DDS had ever asked her about concerns in the home prior to the move.

In her email, Hogan wrote that she personally reported to the DPPC that Mercy had been improperly moved from Karen’s home. “Mercy has consistently stated she believes her rights were violated,” Hogan wrote, “and DDS should be held accountable. And she fully believes the move was retaliation due to herself and her shared living monitor (Karen) speaking up.”

DPPC decides against full investigations of emotional abuse allegations 

Karen said she also reported three allegations of emotional abuse against Mercy to the DPPC in May, just before Mercy was removed from her home. Those allegations include instances involving the job coach and the service coordinator, and the then pending removal of Mercy from her home.

Subsequent letters addressed to Mercy from DDS Area Director Denise Haley, dated May 27, indicate that Karen’s allegations were referred to DDS for an Administrative Review.

According to DDS regulations, an Administrative Review is undertaken when the DPPC “screens out” abuse and other allegations for full investigations by either the DPPC itself or DDS (115 CMR 9.11). It’s not clear to us why DPPC would have screened out Karen’s and Hogan’s allegations, as both Karen and Mercy stated that Mercy had suffered emotional injury as a result of the alleged abuse.

No response to COFAR query sent to DDS area director and Venture CFO

On July 19, I sent an email query to DDS Area Director Haley and to Cote, the Venture executive vice president and CFO, raising our concerns about the removal of Mercy from Karen’s home and the termination of Karen’s shared-living contract, apparently without written cause. I cc’d Anthony Keane, the DDS Worcester regional director.

In the email, I discussed Karen’s and Mercy’s allegations of retaliation by Venture against them for having alleged abuse by Venture employees. I asked for any comment Cote or Haley might have. To date, I have not received a response from any of those persons to my email.

DDS removes client’s eligibility for Medicaid funding for shared living services

In my email to Haley, Cote, and Keane, I said we were also seeking an explanation for the apparent disqualification by DDS of Mercy from eligibility for Medicaid Intensive Support Waiver Services. A July 6 legal notice from DDS stated that Mercy was being denied eligibility for the Intensive Support Waiver. No reason was given for that denial in the notice, other than an unsupported and unexplained statement that there were “no waiver services” available.

We agree with Mercy that a full investigation is warranted of Venture’s apparently unlawful removal of her from her home, and of the other alleged instances of emotional abuse against her. We also would urge DDS to immediately refer Karen to another shared-living contracting agency, and that she be reimbursed retroactively for having provided shared-living services to Mercy since May.

This case appears to fit a pattern in which family members or other individuals who report abuse or poor care of DDS clients are dismissed or find themselves subject to retaliation by corporate providers or by the Department itself. We are hoping that in continuing to shine a light on these cases that we can help one day break this pattern.

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, 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.

The late Judge Joseph L. Tauro honored at memorial service

June 12, 2019 10 comments

The late United States District Court Judge Joseph L. Tauro, who paved the way for improved care for thousands of persons with developmental disabilities in Massachusetts, was honored on June 7 in a memorial service at the Moakley federal courthouse in Boston.

From 1972 through 1993, Judge Tauro oversaw Ricci v. Okin, a combined class-action lawsuit first brought by the late activist Benjamin Ricci over the conditions at the Belchertown State School. The lawsuit resulted in a consent decree that included the then Belchertown, Fernald, Wrentham, Dever, Monson, and Templeton state schools.

Photos courtesy of Ed O.

Portrait of Judge Tauro at the Moakley courthouse memorial service

Tauro, who died in November at the age of 87, had visited Belchertown and the other Massachusetts facilities in the early 1970s to observe the conditions first hand. He noted two decades later in his 1993 disengagement order from the consent decree that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements.

Together, those improvements and placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world,” Tauro wrote.

Among those attending the June 7 memorial service were former Governor Michael Dukakis, who signed the consent decree in 1975 on behalf of the State of Massachusetts, and Beryl Cohen, the original attorney for the plaintiffs. 

Speakers at the June 7 service included U.S. Supreme Court Associate Justice Stephen G. Breyer, Senior U.S. District Judge Michael A. Ponsor, Governor Dukakis, and Major League Baseball Commissioner Robert D. Manfred Jr. Manfred, an attorney, clerked for Tauro after graduating from law school.

Also attending the service were Ed and Gail Orzechowski, advocates for persons with developmental disabilities. Ed Orzechowski’s 2016 book, You’ll Like it Here, chronicled the life of the late Donald Vitkus, a survivor of the Belchertown school.

In March, as Ed Orzechowski received the 2019 Dr. Benjamin Ricci Commemorative award from the Department of Developmental Services, he credited three men with improving the lives of persons with developmental disabilities in Massachusetts — Benjamin Ricci, Beryl Cohen, and Judge Tauro.

Ed O. and Dukakis at Tauro service

Ed Orzechowski (left) with former Massachusetts Governor Michael Dukakis, who signed the 1975 consent decree in the landmark Ricci v. Okin lawsuit overseen by Judge Tauro.

Gail and Beryl Cohen at Tauro service

Gail Orzechowski, an advocate for the developmentally disabled (left), with Beryl Cohen, the attorney for the plaintiffs in the 1972 class action lawsuit, Ricci v. Okin. Gail’s sister, Carol, is a former resident of the Belchertown School.

Program remembrance of Judge Tauro

A written remembrance of Judge Tauro in the memorial service program.

 

 

 

Judge Joseph L. Tauro, a giant in the treatment of the developmentally disabled, dies at 87

December 3, 2018 Leave a comment

Retired U.S. District Court Judge Joseph L. Tauro, who oversaw the upgrade of the institutional system of care for the intellectually and developmentally disabled in Massachusetts for decades starting in the 1970s, died on November 30 at the age of 87.

Tauro changed the course of history for persons with developmental disabilities in Massachusetts. His many rulings in the landmark Ricci v. Okin class action litigation over conditions in the institutional system in the 1970s and 1980s improved the lives of thousands.

Judge Tauro

The Honorable Joseph L. Tauro

“Judge Joseph L. Tauro treated developmentally disabled individuals and their families with dignity and compassion, and he listened when no one else would,” said Colleen Lutkevich, COFAR executive director. “In 1972 and for the next twenty years, he took a disgraceful system of care where people were warehoused in overcrowded facilities with minimal services, and he used the power of his office and the law to bully and cajole the state and federal government into doing the right thing.”

Tauro ruled in the case of Ricci v. Okin, a combined class-action lawsuit first brought by activist Ben Ricci over the conditions at the Belchertown State School.  Those conditions were chronicled in Ricci’s book, Crimes Against Humanity, and later in books such as You’ll Like it Here, a 2016 account  by Ed Orzechowski of the life of Donald Vitkus, a survivor of the former Belchertown State School.

In 1972, separate lawsuits were initially filed on behalf of the residents of five state schools: Fernald, Dever, Monson, Wrentham, and Belchertown. The lawsuits charged that the facilities were understaffed and that conditions in them were inhumane.

Tauro, who visited the facilities to observe the conditions first hand, noted two decades later in his 1993 disengagement order from the case that the legal process had resulted in major capital and staffing improvements to the facilities and a program of community placements. Together, those improvements and placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

“Services in the facilities were turned around through increased funding and staffing,  and the community system of the Department of Developmental Services was also built, allowing appropriately placed residents to find new homes and jobs in cities and towns all across Massachusetts,” Lutkevich said.  “For those who remained in the facilities, their days also became meaningful, with clinical services, and therapeutic, recreational and work opportunities never before thought possible.”

Involvement in the effort in the 2000s to keep Fernald open

Despite his official disengagement from the Ricci case, Tauro’s involvement in the case did not end after 1993. Eleven years after his disengagement order, he went on to play a dramatic role in an effort by the original plaintiffs in the case to keep the then Fernald Developmental Center open in the face of attempts by the then Romney and later Patrick administrations to close it along with other remaining developmental centers in Massachusetts.

Ultimately, Tauro’s 2007 ruling in the case that the Fernald Center should remain as a residential option to its residents was overturned by the First Circuit U.S. Court of Appeals.

The Appeals Court ruling dealt an enormous blow to the decades of work that Tauro had done in the Ricci case, in part, because the appeals court’s decision included no deference to Tauro’s rulings and expertise. Nevertheless, Tauro’s re-involvement in the case after 2004 demonstrated his caring and humanity as clearly as his earlier involvement had in the 1970s and 1980s.

Speaking about the residents of the Fernald Center during a November 2004 hearing in his courtroom on the potential reopening of the case, Tauro noted that many of those residents were elderly. “In the remaining moments of their lives,” he said, “they ought to be treated with great dignity.”  His remark drew strong applause from the close to 200 observers in the courtroom, many of whom were family members of the residents.

Successive administrations undercut Tauro’s rulings in the Ricci case

Efforts to chip away at Tauro’s legacy in the Ricci case began in the early 1990s under then Governor William Weld, who moved to close nine state-run human services facilities in Massachusetts, including three developmental centers serving the developmentally disabled.

Then in 2003,  then Governor Mitt Romney announced plans to close at least four of the six remaining state-run developmental centers. All of those facilities had undergone upgrades in care and conditions as a result of Tauro’s involvement in the Ricci litigation. Hundreds of millions of dollars had been spent on the upgrades.

Starting with Fernald, those remaining facilities slated for closure included the Glavin, Monson, and Tampleton centers.

Plaintiffs charge that Tauro’s disengagement order had been violated

In 2004, Beryl Cohn, an attorney for the original Ricci plaintiffs, charged that the Romney administration was trying to close Fernald in violation of Tauro’s 1993 disengagement order.  Cohen cited the administration’s planned closure of Fernald in conjunction with
“unprecedented” personnel reductions and budget cuts in the then Department of Mental Retardation system.

According to the plaintiffs, some 30 years after the Ricci class action lawsuit had been filed, the Romney administration had allowed a recurrence of some of the same conditions at certain of the state facilities that had sparked the original case, including insufficient staffing, lack of equipment, delayed maintenance,  infestation of vermin, and other problems.

Tauro’s disengagement order had also required that before anyone could be transferred out of a state-run facility, care in the new location must be certified as equal or better.

In July 2004, the then Fernald League and other plaintiffs filed a motion in U.S. District Court to seek Tauro’s renewed involvement in the Ricci case.

During a contentious hearing in his courtroom in November of 2004,  Tauro appeared to accept the argument that a rush to close Fernald and the other facilities without adequate plans for the welfare of their current residents could violate his disengagement order. He also noted that many communities had not accepted group homes for the developmentally disabled, and that it could be difficult to find placements for Fernald residents.

“What’s the advantage in hurrying to speed up the closing (of Fernald) if it’s going to speed up litigation that’s going to last for five years?” Tauro said in pointed remarks to counsel for the Department of Mental Retardation and DMR Commissioner Gerald Morrissey, who was in attendance. “I don’t know if I’ll accept this case. If I do, I’ll come up with a solution…Let’s get it done right so everyone applauds it.”

Tauro forbids discussions of transfers from Fernald 

In January 2005, Tauro stated that he was prepared to step back into the case if Cohen were to demonstrate that care and services to transferred individuals were being cut. He ordered DMR officials to provide Cohen with Individual Support Plans (ISPs) for all Fernald residents, including those who had been transferred elsewhere.

Over the next six months, Tauro continued to hold hearings. In June of that year, he warned the administration not even to discuss transferring residents out of Fernald with families unless the ISPs stated the moves were appropriate. “If there is no ISP in place, then
there will be no discussions on transfers (out of Fernald),” Tauro said, as DMR Commissioner Gerald Morrissey and his legal staff sat before him in the courtroom. “If that’s not going to happen, then we are going to have a little trouble.”

Tauro appoints U.S. attorney as court monitor in Fernald closure 

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers by DMR of 49 residents from Fernald since 2003.  Pending the completion of Sullivan’s review, Tauro ordered a halt to all further transfers from Fernald to other locations.

In March 2007, in a stunning blow to the Fernald closure advocates, Sullivan recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation that Fernald remain open, Sullivan maintained in his report to Tauro that while the level of care there might be able to be duplicated elsewhere, the loss of familiar surroundings and people “could have devastating effects [on the residents] that unravel years of positive, non­abusive behavior.” Nevertheless, Sullivan concluded that the state had followed the letter of Tauro’s 1993 disengagement order in that administration officials had technically certified that persons transferred from Fernald would receive equal or better care.

Sullivan also told Tauro that he found two areas of “significant concerns” in community-­based care. One involved the delivery of medical services in the community, and the second involved the potentially higher risk of abuse and neglect in community­-based residences than in the facilities and other state-­operated residences.

Final ruling that Fernald must be offered as a residential option

Despite Sullivan’s recommendation, the Patrick administration did not back away from the Romney administration’s position on the developmental centers, and continued to press ahead to close Fernald.

That led to Tauro’s final ruling in August 2007 that Fernald residents and their families and guardians must be offered the option of remaining at Fernald. The ruling was seen by the administration as preventing the closure of Fernald, and the administration appealed the ruling to the First Circuit U.S. Court of Appeals.

Tauro’s final ruling is overturned

Without considering the merits of Tauro’s reasoning in his 2007 ruling, the three-judge federal appeals court panel ruled in October 2008 that Tauro never had jurisdiction to reopen the Ricci case. As such, the appeals court allowed the Patrick administration to proceed with Fernald’s closure. That closure, however, was not completed for another six years as more than a dozen families and guardians of the remaining residents exercised their right to administrative appeals of the transfers of the residents.

Tauro seals the records

After the First Circuit Court of Appeals overturned his 2007 ruling that Fernald remain as a residential option, Tauro closed the Ricci case and sealed the documents. Among those documents was a report that Sullivan had provided to Tauro on what appeared to be the involuntary removal from Fernald of Anna Tross,  a 91-year-old resident of the facility.

According to testimony at a March 2008 hearing held by Tauro into the circumstances surrounding Tross’s removal from Fernald, Tross had told several people that she didn’t want to leave Fernald.

Appeal to U.S. Supreme Court to restore Tauro’s Fernald order fails

In February 2009, the Fernald plaintiffs, represented by Hofstra University law professor Leon Friedman, filed a petition for Certiorari with the Supreme Court, seeking to restore Judge Tauro’s 2007 order keeping Fernald open as a residential option.

The petition also sought to resolve the issue of whether Appeals Courts should give deference to district court decisions in consent-decree cases.  In this instance, the First Circuit Court acknowledged that it had not given any deference to Judge Tauro, despite his 35 years of expertise in overseeing the Ricci case.

The Supreme Court declined without comment to issue a Writ of Certiorari to consider the Fernald plaintiffs’ appeal.

Created national models

The Boston Globe noted that in his 41 years on the bench, Tauro “crafted decisions that created national models not only for the care of the developmentally disabled, but also for the rights of the mentally ill to refuse unnecessary medication and avoid solitary confinement except in emergency situations.”

“Whatever powers the Constitution has granted our government, involuntary mind control is not one of them, absent extraordinary circumstance,’’ Tauro wrote in a decision in the 1970s that established what are known as “Rogers Orders,” protecting the rights of the mentally ill.

“Judge Tauro was a fearless judge and a moral humanitarian who made the ‘impossible’ possible,” Lutkevich said. “He nearly single-handedly changed the lives of thousands of individuals with intellectual disabilities and their families.  COFAR families are forever grateful to him.  May he rest in peace.”

Father and sister will finally be allowed contact with disabled woman as 3-year DDS family-separation order is eased

November 13, 2018 3 comments

After three years, a state employed guardian is at least partially lifting a ban on family contact with a developmentally disabled woman, and is allowing the woman’s father and sister to visit her.

In a November 6 email to Ashley Barr, the disabled woman’s sister, Dorothy Wallace stated that she was granting permission to Ashley and to David Barr, the woman’s father, to visit the 30-year-old woman for the first time since November 2015. The woman has been diagnosed with an intellectual disability and mental illness.

Wallace has never clearly explained the reason for her family separation policy, which has nevertheless been upheld by the Department of Developmental Services. DDS pays Wallace to serve as a guardian to the woman and to other departmental clients.

Chelsea, David, and Ashley Barr

David and Ashley Barr. They have been prohibited, for unclear reasons, from contact with their developmentally disabled family member for the past three years.

In her email, Wallace wrote that she would now allow visits because the woman’s mother, Nancy Barr, has been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003.

Nancy Barr pled guilty on November 6 to sexual assault charges and was sentenced to two years in prison. Leone pled guilty to similar charges in May and is serving a three to five-year prison term. The sentencing of both Leone and Nancy Barr had repeatedly been delayed during the past year.

During the period of the assaults, the woman had been under the care of her mother and had been living in her mother’s home. David Barr said that Nancy has also been diagnosed with mental illness.

Neither David nor Ashley, nor any other members of the family were involved in the abuse of the disabled woman or were ever charged in the case.

Yet, for the past three years, Wallace prohibited all members of the family other than an aunt from having any contact with the woman, and had not even informed the family as to where she has been living. We are withholding the woman’s name because she was a victim of sexual assault.

Ashley, whose first visit with her sister following the lifting of the ban was today at a DDS area office, said her sister appeared alert and happy to see her and her father. Regular weekend visits will be scheduled for the foreseeable future at a group residence in Haverhill in which her sister is now living.

Ashley also said she intends to apply in court to become her sister’s guardian and that David is supporting her in that.

Ashley told COFAR that in the months prior to the November 2015 ban on visitation, her sister appeared drugged when they were allowed to visit her, and, in one instance, did not appear to have been bathed.

COFAR has repeatedly asked Wallace and DDS for an explanation for the family contact ban specifically on David and Ashley. In an email to both Wallace and DDS Commissioner Jane Ryder on November 9, I also asked what the sentencing of Nancy Bar, in particular, had to do with the family separation policy.

David and Ashley had been among the most involved family members in the woman’s life and care, and have led the family’s effort to resume contact with the woman. To date, neither Wallace nor Ryder have responded to our queries about the case.

In her November 6 email, Wallace implied that she is stepping down as the woman’s guardian, stating that, “With the completion of the sentencing (of Nancy Barr), I have fulfilled my obligation to (the disabled woman) and as promised to Ashley and Mr. Barr they can now coordinate visits with (the woman).”

We have never seen another case in which such a complete and lengthy prohibition on contact was imposed on family members who were not charged or, as far as we know, accused of any serious misconduct with regard to a disabled individual. As we’ve said before, we think this ban has been enforced in violation of DDS regulations, which state that people in the Department’s care have the right …“to be visited and to visit others under circumstances that are conducive to friendships and relationships…”

We think there is a fairly universal consensus that family separation in social services should be imposed only as a last resort, and then should be used sparingly and for as short a time as possible. If family separation is imposed, authorities should be transparent about it and communicate as much information as possible to those family members affected. In our view, none of those criteria were met in this case.

During the past three years, different reasons have been given to the Barr family for the separation policy:

  • In an August 2015 hearing in probate court, Wallace testified, according to the hearing transcript, that she was imposing restrictions on contact between the woman and her father and sister because David and Ashley became overly emotional when they had been allowed to visit her.
  • Wallace contended that those visits, which took place in hospital settings after the arrests of John Leone and Nancy Barr on the assault charges, caused the woman to exhibit psychotic symptoms afterwards.
  • Last February, Ashley was told by DDS General Counsel Marianne Meacham that there was concern on someone’s part that a visit from David and Ashley would somehow make the woman “lose focus” in preparing to testify in the trial of Leone and Nancy Barr. Meacham told Ashley that visits would be permitted once the trial, which was originally scheduled to be held in April, was over.
  •  Despite Attorney Meacham’s contention that the ban on family contact was related to the then ongoing criminal case, a spokesperson for the D.A.’s office told COFAR in February that the D.A. was not responsible for the ban, and that it had been ordered by Wallace.
  • And despite the assurances given to Ashley, visits with her sister were not scheduled even after Leone pled guilty to sexual assault last May. David and Ashley were now told they would not be allowed any contact with the woman until Nancy Barr was sentenced in the case. That sentencing occurred only last week.

DDS officials appeared to be biased against the family

As COFAR reported, Wallace and other DDS officials made a number of statements about Ashley and David during the August 2015 probate court hearing that appeared to indicate a bias against them.

Many of the statements appeared to be hearsay or to lack  foundation, including Wallace’s statement that hospital clinicians told her the woman exhibited psychotic symptoms after visits from David and Ashley. At the time of her testimony, Wallace had been appointed as the woman’s temporary guardian.

The court hearing concerned a request by David and Ashley that they resume regular contact with the woman and that David be appointed as her permanent guardian. The judge, however, ruled instead in favor of the appointment of Wallace, the candidate recommended by DDS, as the woman’s permanent guardian. David Barr had tried without success to gain guardianship of the woman after his divorce from Nancy Barr in 2003.

Despite the judge’s ruling in 2015, the court does not appear ever to have issued an order banning any members of the family from having contact with the woman.

Ashley acknowledged she and her father did become emotional during visits with her sister prior to the complete visitation ban in November 2015 because she appeared upset at being kept isolated from them and often appeared to be over-medicated.

“For several visits we did cry in front of (her sister), I mean how could we not?” Ashley said in an interview in 2016. “She was alone, scared, by herself, and just went through a horrific thing for about two years. So yes, my father and I did cry, and I was an emotional mess for a very long time.  Watching my sister all drugged up, she could barely talk, and given the state she was in, it was very hard to keep it in. I walked out of the room most of the time so my sister wouldn’t see me.”

In one of the last instances in which they were allowed to visit the woman, Ashley said it appeared she had not been bathed.  Ashley said she personally gave her a shower at the hospital. Her hair was so dirty and matted, Ashley said, that she had to use an entire bottle of shampoo and conditioner to untangle it.

Little information and little help from legislators

After the woman told a family friend about the alleged abuse in 2014, the friend reported the matter to police, and the woman was immediately removed from her mother’s care. She was apparently placed in a shared living arrangement, but that location was not disclosed at the time to any other members of the family.

In the months that followed, the family was only sporadically informed about their family member’s whereabouts.  Ashley and her father said that virtually no information was provided to them for the first month after her removal. They were then allowed to visit her only a handful of times, either at a DDS area office or in Massachusetts hospitals to which she was admitted, reportedly after psychotic episodes.

David and Ashley said they tried for months after the ban on further contact was imposed to get answers from DDS and from Wallace, and got little or no response from them. They also contacted their local legislators and got little help, and even went to the media, but were unable to get any news outlets to report their story.

Ashley said the ban on contact was so complete that when she found out in May 2016 that she was pregnant, Wallace denied her request that her sister be allowed to come to the baby shower. She said Wallace also told her that her sister would not be informed that she was pregnant.

One aunt allowed visits, another blocked

For unknown reasons, the only family member who has been allowed to visit the woman has been a maternal aunt who apparently agreed not to reveal the woman’s location to Ashley or David. The aunt told COFAR, however, that she thought David and Ashley should be allowed to visit the woman.

In the meantime, another aunt of the woman’s as well as a family friend were blocked from visiting her.

In an interview with COFAR in August of this year, Susan Zeytoonian, a paternal aunt of Ashley’s, said she had accompanied Ashley to visit the woman shortly before Wallace banned all family contact. Zeytoonian said that prior to the removal of the woman from her mother’s care, the woman had frequently spent time at her house.

According to Zeytoonian, the woman was happy to see them during their 2015 visit and “came runnng down the hall.” She said she had not seen her niece since that visit.

The family friend who initially reported the alleged sexual abuse of the woman to police had initially been allowed to visit her. However, the friend told COFAR that when she tried to visit the woman at Tewksbury State Hospital in April 2016 on her 28th birthday, she was told that she was no longer there.

The friend said she was also told by a staff member at the hospital that she too had been placed on a no-visitor list.  She said she was not given a reason for that prohibition.

Disability Law Center tried to find a solution in the case

In early 2017,the Boston-based Disability Law Center temporarily intervened in the case to ask a state-appointed attorney who is representing the woman, to support family visits if the woman wished that. However, that effort was not successful.

The attorney, Melissa Coury Cote, told COFAR in March 2017 that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request. Cote provided no reason for opposing family visits other than to say that the woman had not specifically asked her to allow visits from her father and sister.

However, Ashley Barr said at the time that her sister had recently called her father on two occasions and said she missed her family and wanted to see them. The calls were apparently unauthorized. Ashley said she and her father didn’t know whose phone the woman used to contact them.

While we are glad that a step toward reuniting the family has finally been taken by Wallace and DDS, we remained concerned that the Department and its professional guardians do not appear to operate in accordance with the Department’s own regulations on the rights of its clients and their families.

This case, moreover, illustrates the need to make reforms to the DDS-probate court system that ensure that clients and families are treated fairly and their rights and wishes are respected. Among the reforms we have proposed are the following:

  • Passage of legislation requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.
  • The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the Department or from providers.
  • The provision of free legal assistance to family members whose guardianships are challenged by DDS.
  • A policy statement by DDS that the Department will make every effort to comply with the federal Developmental Disabilities Assistance and Bill of Rights Act, and, in particular, the statement in the law that individuals with developmental disabilities and their families are “the primary decision makers.”
  • Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.

Without reforms such as these, we are afraid cases such as this one will happen again and again.

In accordance with his wish, Donald Vitkus is laid to rest in cemetery of the former Belchertown State School

June 24, 2018 2 comments

“We are powerless to consecrate this ground. The people laid to rest here have all consecrated it.”

Those were the words of Donald Vitkus’s grandson, William, as Donald’s ashes were interred Saturday following a memorial service at the Warner Pine Grove Memorial Cemetery for residents of the former Belchertown State School.

It was Donald’s wish that he be buried along with his “brothers and sisters” in the “Turkey Hill” cemetery.

Beneath the tall pines that protectively ring the small cemetery enclosure, some 70 people gathered for the memorial service in which family, friends, and fellow advocates for the developmentally disabled spoke with eloquence about the impact Vitkus had on their lives.

Vitkus ceremony1

Members of Donald Vitkus’s family at Saturday’s memorial service. His wife, Patricia, is in the center.

Vitkus, who died of a brain tumor in January at the age of 74, lived a life that took him from the notorious state school to a tour of duty in Vietnam, a first marriage that failed because he was unable to relate emotionally to his wife and children, and a later reconnection with his son, David, and other members of his family.

Vitkus was married in 1995 to his second wife, Patricia, who was in attendance at Saturday’s ceremony. In his later years, he became a passionate advocate for the developmentally disabled.

At the age of six, Vitkus was sent to Belchertown by foster parents, and remained there until he was “paroled” at the age of 17. The institution, which was closed in 1992, was one of many such facilities in Massachusetts that became the targets of a federal class-action lawsuit, Ricci v. Okin, which brought about significant upgrades in care and services in facilities throughout the state.

At Saturday’s memorial service, the speakers included Vitkus’s son, David, granddaughter, Helena, and grandson, William. Among the others who spoke were Department of Developmental Services Commissioner Jane Ryder, and Edward Orzechowski, who became a close friend of Vitkus’s while writing You’ll Like it Here, a book about Vitkus’s life at Belchertown and afterward, as Vitkus struggled to overcome the scars left from his experience at the institution.

In March of this year, Vitkus was posthumously given the Benjamin Ricci Commemorative Award at an annual Statehouse award ceremony, which recognizes the accomplishments of individuals served by DDS and the dedication of caregivers and advocates.

In 2005, Vitkus received an associate degree in human services from Holyoke Community College. It was there that he organized a speaking event that same year for Ben Ricci, the original plaintiff in Ricci v. Okin and the author of Crimes Against Humanity, a landmark book about Belchertown and the filing of the lawsuit.

Orzechowski, who attended the 2005 speaking event, said Vitkus approached him there, and asked him to write a book about his experience at Belchertown. At Saturday’s ceremony, Orzechowski said Vitkus had later quipped that he had organized the speaking event for Ben Ricci in order to score “brownie points”  to boost his G.P.A. at the community college.

Ryder said she has provided a copy of Orzechowski’s book to every member of the DDS senior management. “We need to always be vigilant about the services and staff and to question the experts,” Ryder said. “We need to listen to the individuals and their families.”

Vitkus ceremony2

Friends and family at Saturday’s memorial service for Donald Vitkus

Orzechowski stood silently before speaking and then recounted several anecdotes about Vitkus, some of which are in Orzechowski’s book, and others that occurred when Vitkus and Orzechowski went on speaking and book signing tours together after You’ll Like it Here was published in 2016.

Orzechowski recalled how Vitkus had always resisted authority, even biting off part of an attendant’s finger at Belchertown after the attendant had tried to stuff anti-psychotic medications down his throat. Vitkus spent 34 days in solitary confinement as a result.

Orzechowski also recounted how Vitkus had escaped twice from Belchertown, and was picked up each time by the same police officer, who took him for ice cream the second time before returning him to the facility.

William Vitkus, who, like Helena, recalled Donald as a loving grandfather, said the question had “gnawed” at him as to why he had asked to be buried in a cemetery for residents of an institution that was an “ugly place with bad memories.”

“He (Donald) had spent his whole life trying to prove he never belonged (at Belchertown),” William said.  “Why should the state school now get to keep him?”

William said that he finally came to realize that it wasn’t the institution, but the residents there with whom Donald felt a life-long kinship, and that he felt he was “no different than the people buried here. They were his family.

“We’re here,” William added, “to help him (Donald) fulfill his last act of advocacy — a last stick in the eye to all who told him and his brothers and sisters that they would amount to nothing.

“There is no more sacred spot for my grandfather to rest,” William continued. “We are powerless to consecrate this ground. The people laid to rest here have all consecrated it.”

Donald Vitkus’s son, David , a former Northampton police officer, talked about how Vitkus had initially been unable to relate to his family because of the emotional scars from his childhood. “He was lacking in the nurturing we all got,” David Vitkus said. “He was aloof and couldn’t express his feelings.”

But David noted that Vitkus later overcame that inability to relate, and reconnected with him. The father and son then embarked on a literal search for Donald’s past, which took them to the Belchertown institution, which was then in the final process in the early 1990s of closing.

David described his father as a humble man who “was always keenly aware of the opportunities he received that others simply didn’t….I think he would want me to say one last thank you for being there for him. So thank you very much.”

DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

May 14, 2018 23 comments

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban.  Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.

In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.”  But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

We have previously noted that we have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.

DDS regulations, which give DDS clients the right to receive visitors, specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

Enforcement of the ban raises further questions

Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.

Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.

In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.

As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.

Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.

Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.

Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.

“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.

Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.

“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.

During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”

On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”

On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.

Tens of millions of dollars in government funding

As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.

TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.

According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017.  Kevin Stock, TILL vice president, received $229,988 in total compensation.

I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.

I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.

TILL’s financial and business practices have in the past been the subject of controversy.  A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.

In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.

This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.

Donald Vitkus, inspirational survivor of the Belchertown State School, dies at 74

January 26, 2018 9 comments

Donald Vitkus, a survivor of the former Belchertown State School, whose life became an inspiration to many in the disabled community, died Wednesday of complications from a brain tumor.

Vitkus was the subject of a book published in 2016 by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for families and persons with developmental disabilities in western Massachusetts.

Orzechowski’s book, “You’ll like it here,” chronicled Vitkus’s childhood at Belchertown in the 1950s, and his life afterwards in which he dealt with lasting emotional effects of his experiences in the institution. After an initial failed marriage and a literal search with his son for his past among Belchertown records, he found his calling in recent years as an advocate for persons with developmental disabilities.

Vitkus’s wife, Patricia, said there will be a memorial service in Massachusetts at a later date.

Vitkus was sent by a foster family to Belchertown in 1949, when he was six years old.  He had a tested IQ of 41 and was labeled “a moron” in the state school records, according to Orzechowski’s book.  In fact, that assessment of Vitkus cognitive ability and similar assessments of many of his peers at Belchertown proved to be wrong. He and many of his fellow “inmates” had to use their wits to survive there.

Donald Vitkus photo4

Donald Vitkus speaking at a recent event in his role as an advocate for people with developmental disabilities

In his book, Orzechowski described how Vitkus first approached him in 2005 following a book signing for “Crimes Against Humanity,” a detailed account by the late Benjamin Ricci of conditions at Belchertown and the other institutions prior to the 1970s. Ricci launched the class action lawsuit, Ricci v. Okin, in that decade that resulted in major improvements  in the care and conditions in the facilities.

In a post yesterday on Facebook, Orzechowski said that when he first met Vitkus at that book signing, Vitkus was then a 62-year-old student at Holyoke Community College, earning a degree in human services.

Vitkus told Orzechowski that he had grown up at Belchertown and was looking for someone to help him write his story. “I had no idea how important this man would become in my life,” Orzechowski wrote yesterday. 

“You’ll like it here” describes what were at the time horrifying conditions at Belchertown, and the treatment of the residents as prison inmates who could be abused with impunity.

When Vitkus refused at one point to take antipsychotic medication that was then routinely given to everyone, an attendant tried to jam the pills down his throat.  Vitkus bit off the attendant’s finger and was placed in solitary confinement for 34 days as punishment.  He noted to Orzechowski that the medication was used to keep the residents docile.

Orzechowski also described how the introduction of a television set, donated by a parents’ group,  opened Vitkus’s mind to the outside world, but also raised troubling questions for him, particularly about things such as the civil rights struggles of the late 1950s. From the book:

“Why were colored people treated like that?” he wondered.  “Why was anyone treated like that? Why did places like Little Rock, Montgomery, and Belchertown exist? Where was justice?”

In 1960, Vitkus was “paroled” from Belchertown at the age of 17, after graduating from the sixth grade at the school. He was sent to a program run by the Catholic Church called Brightside. Later, he enlisted in the Army and was sent to Vietnam where he lost a buddy who was killed in a firefight.

After his return from Vietnam, Vitkus got married to a young woman whom he’d met while he was a resident at Brightside. He also took night classes at a local high school and received a high school diploma.

But while Vitkus and his wife had two children, he found that he was incapable of expressing affection for her or for his children.  Eventually, his wife filed for divorce.

Vitkus  later reconnected with his son, Dave, who became a police officer in Northampton, and the two of them went on an exhaustive hunt together for information about Vitkus’s past.  That search took them to Belchertown, which was then in the final process in the early 1990s of closing.

At the age of 52, Vitkus remarried, earned an associate degree in human services at Holyoke Community College, and began a new career in caregiving to people with developmental disabilities.

Orzechowski offered some remembrances of his experiences with Vitkus in just the past year during a series of book signing events in western Massachusetts. One of those events was at Whole Children, an agency established in Hadley by mothers of developmentally disabled kids.

As Orzechowski described it:

It was a terrible stormy night last January—i thought it might be cancelled—but a sizeable crowd still showed. I saw one woman in the audience sitting with her son, probably middle school age. She later told me that her son is seldom communicative, but on the way home in the car he couldn’t stop talking about Donald and that he wanted to grow up to be like him, speaking out and advocating.

 At another event at a bookstore in Westfield, Orzechowski said:
I had watched a woman in the audience, clearly moved. When Donald called for questions following our presentation, he asked, “What brought you here, ma’am?” — a question he often asked. The woman was so emotional she couldn’t speak. There was a long silence, and Donald went to her and embraced her. This from a man who at one time couldn’t stand to be hugged because it reminded him of abuse and restraints.
At a coffee shop:
Donald and I had dropped off some books to be sold at Gail’s (my wife) hairdresser’s shop. Donald and I went next door for coffee, and were at a table talking. A woman (Darlene) who had been sitting near us (she was wearing an apron, on break) said she couldn’t help overhearing, and introduced herself. She had also been a patient at Belchertown as a child. She and Donald started reminiscing, and I went out to my car to get a book to give to her. We continued talking after I gave her the book, and before she left I told her that there were several pictures in the back of the book. She was still standing at our table, and when she opened to those pages, her hands started to tremble. It was extremely moving.

In his Facebook post yesterday, Orzechowski described Vitkus as “a man of courage, justice, integrity, resiliency, humor, and humility. He was a remarkable advocate for the rights and care of people with mental disabilities.”

Orzechowski added that, “I am both privileged an honored to have shared his life story, and to have become a very close friend. We had quite a journey together.”

New Yorker article on guardianship abuses has familiar ring

November 8, 2017 Leave a comment

An article last month in The New Yorker magazine on abuses in the guardianship system in Nevada is beyond disturbing, and its findings echo many of the concerns we have raised about the dysfunction of the Department of Developmental Services and probate court systems in Massachusetts.

The New Yorker article is primarily about abuses by guardians of the elderly, and it gets into an issue we haven’t fully explored, which is the financial exploitation of people who are represented by professional guardians. But we think many of the article’s points are relevant to the system involving DDS-paid guardians in Massachusetts.

As we have seen in several cases in Massachusetts, the DDS-probate guardianship system has trampled over the rights of family members of developmentally disabled persons, including sharply limiting or even eliminating their right in some cases to contact or visit their loved ones. That is also apparently a feature of the system described in the New Yorker piece.

As is the case in Massachusetts, the primary problems with the system exposed by the New Yorker article appear to lie with abuses by attorneys or other professionals who are appointed as guardians of incapacitated individuals. In many of these cases, family members, who would be better suited to be the guardians, are passed over by the courts and excluded from consideration for that role.

The article and previous reporting by The Las Vegas Review-Journal disclose how two professional guardians named April Parks and Jared Shafer used the probate system in Nevada to become court-appointed guardians of hundreds of people who were mostly elderly, and then took control of their bank accounts, estates,and property.

It isn’t clear whether that type of financial abuse has happened to developmentally disabled persons in Massachusetts, but there appears to be a potential for it. In 2008, an investigative article in The Boston Globe found that some 900 DDS clients in Massachusetts received little or no benefit from trust funds containing some $30 million.

Instead, the money was largely siphoned out of the accounts to pay bank management charges, legal bills, and fees charged by the Massachusetts Probate and Family Court system, “which has long neglected its obligation to ensure the funds are expended for the benefit of some of the state’s most helpless citizens.”

In July, COFAR reported that the state’s system of paying attorneys and corporate providers to serve as guardians of DDS clients is poorly overseen and that the system appears to give professional guardians an incentive to do little work representing individual clients while taking on as many clients as possible.

Families have also been victimized financially by the Massachusetts system. As one family member of a DDS client in Massachusetts described the attitude of the various guardians and clinical and court professionals that she dealt with in the DDS-probate system, “it was just a given that our checkbook was theirs.”

The New Yorker reported that without their families even knowing it, in many instances,  elderly people were removed from their homes by Parks and Shafer who then sold their property and pocketed the money. Parks was indicted last spring on theft and other charges after the local media finally ran stories on the issue.

The New Yorker article further stated that when family members tried to contest the guardianships or become guardians themselves, “they were dismissed as unsuitable, and disparaged in court records as being neglectful, or as drug addicts, gamblers, and exploiters.”  That sounds familiar to us because it is what we’ve seen in a number of cases in Massachusetts.

Another revelation in the article that sounded familiar to us was that the professional guardians often would not inform families about the care and conditions of their loved ones, and often prevented family members from being able to visit them. The director of an assisted-living facility into which many of the wards were placed, is quoted as saying that families were “devastated that they couldn’t know if the residents were in surgery or hear anything about their health. They didn’t understand why they’d been taken out of the picture. They’d ask, ‘Can you just tell me if she’s alive?’ ”

In one case, an elderly couple was moved with little notice by April Parks to a new assisted-living facility. When their daughter tried to visit them there, Parks refused to let her see her parents. According to the article, Parks later wrote that she had told the woman that “she was too distraught to see her parents, and that she needed to leave.” When the woman refused to leave the facility, Parks had the police called who then cited the woman for trespassing.

This sounds very similar to the reasoning given for keeping David and Ashley Barr from visiting David’s daughter, a developmentally disabled woman who has been ordered kept from their contact by a DDS-paid guardian since November 2015. The Barrs were supposedly too emotional when visiting her even though they said the reason they were emotional was because they often found her to be in a heavily drugged state during the visits.

Another family was prevented from talking to their daughter on the phone for a similar reason.

Another revelation in the New Yorker article that had a familiar ring was a description of the longstanding inaction of investigative authorities when presented with evidence of abuses in the guardianship system.

As we’ve said many times, a first step in reforming the DDS-probate system in Massachusetts would be for the Legislature to enact H.887,  a bill which would establish a presumption that parents of a developmentally disabled person are suitable guardians for that person.

The bill would thus make it harder for parents to be bypassed by probate judges who tend to side with DDS, which often favors the appointment of professional guardians in the place of families.

H.887, however, has been stuck in the Judiciary Committee since last January despite the fact that there appears to be no public opposition to the measure. It has been re-filed by Representative David Linsky in every Legislative session since 1999, but has never gotten out of the Judiciary Committee to our knowledge.

We’re hoping, as usual, that this year will be different. But despite a supportive statement last spring from Representative Claire Cronin, House chair of the Committee, that the bill was her “top priority,” the measure hasn’t moved forward in the current legislative session.

It’s time for the Judiciary Committee to finally act on H.887.  The numbers to call there are:

(617) 722-2396 for the office of Rep. Cronin, House chair; and/or

(617) 722-1280 for the office of Senator William Brownsberger, Senate chair.

As noted, this bill is only a first step. We are continuing to urge others in the Legislature as well to step forward to address the underlying systemic problems in the DDS and probate court systems.

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