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Guardian and Special Master point to each other regarding the release of Sara Duzan’s clinical records
A court-appointed guardian for Sara Duzan and a psychologist appointed to oversee the guardianship have both declined to release clinical records about Sara’s care to her family, with each saying it is the other’s responsibility to provide them.
The family has been seeking the records to verify a claim made by the guardian, Lynne Turner, that Sara has “has been progressing very well” in recent months in a group residence operated by Becket Family of Services, a corporate provider funded by the state Department of Developmental Services. Turner has forbidden the family from communicating with Sara since November and from visiting her since last July, when she was first placed in the Westminster residence by Turner.
Members of the Duzan family say they are concerned that Sara has been subjected to abusive physical restraints and seclusion at the Becket residence, but that they have had no way of knowing what Sara’s care and living conditions really are.
Both Turner and Andrea Barnes, a clinical psychologist, who was appointed in July 2013 as a Special Master in the probate court case, have each contended in emails and letters in recent weeks that it is the other’s responsibility to provide Sara’s clinical records to the family.
Sara, now 22, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from both an admission by Sara’s mother, Maryann, that she once slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that the family had been uncooperative with providers in caring for her. Maryann said she slapped Sara on the cheek on one occasion in 2009 while Sara was acting aggressively towards her.
Sara Duzan with her father, Paul, on an outing a couple of years ago in western Massachusetts. The family is no longer permitted any contact with Sara, and has even been denied access to records of her care in her current DDS-funded residence.
Thomas Frain, an attorney for the Duzan family, initially wrote to Turner on January 10 of this year, requesting Sara’s medical administration records, behavioral plan, records regarding restraints, shift notes and other clinical records concerning her care in the Becket residence. Frain is also the president of COFAR’s Board of Directors.
Turner initially responded to Frain’s request with a letter, dated January 12, in which she stated that she would produce the requested documents if she was first paid $10,000. Her letter stated that her requested payment consisted of $5,000 for producing the records themselves and $5,000 in back payments for her work as guardian.
Turner, who was appointed Sara’s guardian in December 2011, has billed the Duzan family for her guardianship services, but the family has declined to pay her, contending the court order under which Turner was appointed contained no provision for payment of her. The Duzans also contend that Turner has not been acting in Sara’s best interest by keeping her in the Becket residence and by cutting off the family’s communication with her.
Following her letter seeking payment of $10,000, Turner sent Frain a second letter, dated February 2, in which she stated that she did not control Sara’s records or have responsibility for producing them. She stated: “Your concern for Sara should be directed to Dr. Barnes, not me. Dr. Barnes was copied in your letter to me and has the list of documents you requested. She is paid for her work. I am not.”
Frain then wrote to Barnes on February 7, asking her to provide the documents. But in an email in response, dated February 11, Barnes stated she was “not in a position” to provide the records and that it was not her “role” to do so. She also maintained that she was personally “reluctant to supply” the family with the records because the family has been “uncooperative” and has taken an “adversarial and antagonistic position, soliciting support through blogs and public campaigning rather than making any attempt to work with Sara’s providers or with me.”
Barnes added that Turner, as guardian, had the authority to release the records to the family and that she (Barnes) was “not at this time going to overrule the guardian’s decisions about sharing documents.”
I sent an email to both Turner and Barnes on February 21, asking for clarification as to which of them had responsibility for releasing the records and why the publication of blog posts about the family should preclude them from receiving records about their daughter’s care. I noted that the records were “vital in assessing any claims made about the use restraints or other aspects of (Sara’s) care, treatment and living conditions in her residence…”
I also asked in my email to Turner and Barnes whether either of them had yet visited Sara in her residence since she was placed there by Turner in July. I have so far received no reply to my message from either Barnes or Turner.
Turner stated in a guardianship report to the probate court in December that she had not yet visited Sara in the Becket residence. For her part, Barnes stated in a November 25 email to Maryann and Paul Duzan, Sara’s father, that she intended to visit Sara at Becket “sometime in the next few weeks.” The family says they have received no indication that Barnes has done so.
Barnes’ November 25 email was in response to a message from Maryann and Paul, asking for Sara’s immediate discharge from the Becket residence because Sara had indicated in phone conversations to them that she was being subjected to restraints and had been assaulted by a staff member. Barnes responded that she had not received any information “supporting the idea that Sara is being abused.”
In her February 2 letter to Frain, Turner maintained that “Sara is progressing very well and is regularly out and about in the community.” Turner stated that Sara’s behavior had “improved substantially,” and that physical restraints had not been used on Sara in over a month “and maybe longer.”
Turner further implied that Sara’s clinical records would verify her positive claims regarding Sara’s progress in the Becket residence. “Are you disputing the fact that Sara is progressing very well and out in the community?” Turner’s letter to Frain stated. ” If you doubt my word, address this with Dr. Barnes…She has the documentation you seek.”
The only clinical records the family has seen regarding Sara’s care at the Becket facility has been a clinical report, which Turner forwarded to the family in December along with her annual guardianship report to the probate court. That report stated that Sara was continuing to be restrained and placed in seclusion in the Becket residence through the month of November.
In her February 2 letter, Turner also defended her decision to cut off the family’s phone contact with their daughter, stating to Frain that “the acting out behaviors and the restraints you expressed concern about were more frequent when there was inappropriate phone contact with the family.”
Both Turner and Robin Thompson, a clinician at the Becket residence, have maintained that the Duzans violated a telephone protocol established for them, which expressly forbade them from discussing visits home or whether Sara was unhappy at the facility or its treatment of her. Sara was also specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
Maryann Duzan says that she and other family members were allowed only six calls to Sara between July, when she was placed at the Becket residence, and November, when their communication with her was cut off; and in each call, Sara indicated that she was being subjected to either poor conditions, abusive restraints, or, in two cases, assaults by a staff member.
Maryann says she believes the strict limits placed by Becket on Sara’s ability to communicate contributed to her behavioral outbursts. “Sara has apparently only been allowed to use a phone there six times in eight months,” Maryann says. “She has been denied the ability to report what is happening in her life to her mother and father.” Maryann adds that while she lived at home, Sara would make at least a dozen calls a day to friends and family members. “Sara is very verbal and social,” she says.
Turner also contended in her February 2 letter to Frain that the Duzans had violated the law by recording conversations “with various parties without their consent.” She provided no further details about that charge. Maryann contends that she and her husband tape recorded one phone conversation with Sara in September because Sara had told them she had been assaulted by someone on the Becket staff. Maryann says no one else was recorded in the conversation. She says she turned the tape recording over to the Westminster Police Department after Sara implicated a staff member in the house as having punched her.
The Disability Law Center is seeking to restore family communication and visitation rights with Sara
In January, both the Duzan family and COFAR contacted the Massachusetts Disability Law Center, a federally funded legal advocacy organization, seeking an investigation of Sara’s care at the Becket facility and the circumstances surrounding the cutoff of the family’s communication with her. In response, a DLC attorney began visiting Sara in the Becket residence earlier this month. Maryann Duzan said the DLC attorney is further attempting to restore the family’s right both to communicate with Sara and visit her.
Meanwhile, DDS is in the process of scheduling a meeting regarding Sara’s care plan, known as an Individual Support Plan (or ISP). In her February 11 email to Frain, Barnes said she believed that “some representative of the Duzan family has a right to attend her ISP meeting.”
The July 2013 probate court order appointing Barnes as Special Master stated that the family “should be invited to all meetings where decisions about Sara’s services will be made or discussed.” Maryann says the family, however, was invited only to one such meeting scheduled in early November. She says Barnes cancelled the meeting after Maryann and her husband indicated they wanted to bring their attorney to the meeting. Maryann adds that the family had been informed the purpose of the meeting was to discuss placing further limits on their communication with Sara.
We have written several times about this case because we believe it raises troubling questions about the power of court-appointed guardians and state-funded corporate providers to overrule families in the care of persons with disabilities. In this case, a family that has been described as “loving” by a probate court judge, has been denied all communication with their disabled daughter for months and has even been denied access to clinical records that would give them an indication of their daughter’s level of care and well-being. The family is being kept in the dark about their daughter, and unless an outside agency such as the DLC is successful in intervening, there may be no end to that darkness.
Thus far, it seems to us, the entire system has been stacked against this family. Even the probate court’s attempts to level the playing field do not appear to have worked. Barnes, the Special Master, was given the power to overrule the guardian with respect to “Sara’s medical, therapeutic, residential, day program, social and familial matters,” but she has never done so.
Moreover, in her February 3 email to Turner concerning Frain’s request for the records, Barnes advised Turner to “take whatever is presented by him (Frain) with a grain of salt.” That is an unfortunate statement coming from a Special Master in this case, who was appointed to that position to resolve impasses between the family and Turner. Barnes is supposed to be a neutral party in this case, but her statement that one side in the dispute should regard the other side “with a grain of salt” appears to call her neutrality into question.
“Our crime appears to have been that we advocated too strongly for Sara,” Maryann says. “But ever since Sara has not had a family member as her guardian, nobody has advocated for her.”
To contact the governor’s office about this case:
Contact info for the Governor’s Office: Massachusetts State House Office of the Governor Room 105 Boston, MA 02133 Phone: 617.725.4005 888.870.7770 (in state) Fax: 617.727.9725 TTY: 617.727.3666 Email: constituent.services@state.ma.us
Note: Do not let the people in the governor’s office tell you this is a probate court matter and there’s nothing the governor can do about it. The DDS has long been a party to this case and has fought to limit the Duzans’ rights and involvement with their daughter.
Also, please sign our petition to the governor to bring Sara home on change.org. Thanks!
State-funded provider execs paid more than $80m a year
More than 550 executives working for some 250 state-funded corporate providers of services to people with developmental disabilities in Massachusetts received a total of $80.5 million in annual compensation as of Fiscal Year 2012, based on nonprofit federal tax reports surveyed by COFAR.
The average compensation among all 559 executives surveyed was $143,969 per year. Among CEOs, the average compensation was $185,809, while executive directors were paid an average of $127,164 in salary and benefits.
According to the COFAR survey, provider executives making over $100,000 a year on average included 97 executive directors, 92 CEOs, 71 chief financial officers, 31 chief operating officers, and 83 vice presidents. CEOs or presidents of 14 providers made over $300,000 each.
“I think few people realize what the real cost of privatized care is in Massachusetts,” COFAR President Thomas Frain said. “Do Massachusetts taxpayers really need to be paying hundreds of corporate executives millions of dollars for grossly duplicative duties? This makes no sense at all.”
COFAR has long been critical of efforts by the Patrick administration and the Romney administration before it to outsource residential and other services to providers without adequate oversight of the growing privatized system. The system appears to have become top-heavy with corporate executives who do not provide direct-care services, but who nevertheless draw large salary and benefits packages.
Most of the providers surveyed are under contract to the Department of Developmental Services, which manages or provides services to people with intellectual disabilities who are over the age of 22. Frain noted that DDS pays more than $1 billion a year in contracts to service providers, which operate group homes and provide day programs, transportation and other services to tens of thousands of intellectually disabled persons in the DDS system.
State regulations capped state payments to provider executives at approximately $149,000, as of Fiscal Year 2011. The average compensation among the surveyed executives was slightly less than that amount. Money earned by executives above the state cap is supposed to come from sources other than state funds.
But while the state cap on executive salaries is intended to limit the total amount of state funds going into the pockets of provider executives, COFAR has reported that the state may not receive complete information on the total compensation paid to provider executives and may not have the capacity to oversee their finances adequately. Also, COFAR has raised concerns that increasing amounts of money going to provider executives has not translated into higher pay for direct-care workers in Massachusetts.
The state auditor reported last year that in one case involving the May Institute, a DDS provider, hundreds of thousands of dollars in state funds had been paid to company executives in excess of the regulatory cap. COFAR’s executive compensation survey found that the May Institute CEO received $404,900 in compensation in FY 2011 and that a total of 12 company executives were paid a total of $2.5 million that year.
At $404,900, the May Institute CEO was the fifth highest paid CEO on COFAR’s list. Community Systems, Inc. topped the COFAR list of the highest paid CEOs, with two employees listed on the company’s federal tax filing as serving as company CEOs in FY 2011 and drawing combined compensation of $526,755. Second on the list was Morgan Memorial Goodwill, whose CEO was listed as making $464,572 in FY 2012.
Community Systems federal tax filing states that the company, which is based in Forestdale, MA, took in $14.4 million in revenues in Fiscal Year 2011. Of that amount, the company received $11.6 million from DDS, according to a 2011 financial report filed with the state’s Operational Services Division.
(The Community Systems OSD report lists only compensation in FY 2011 for two executive directors and does not list the company CEOs. As a result, OSD appears to have disallowed only $21,000 in funding to the company as having been earned above the regulatory compensation cap. This appears to confirm COFAR’s finding that the OSD receives incomplete information from providers on executive compensation.)
In addition to the CEOs listed on the Community Systems federal tax report, two employees were listed as executive directors of the company that year and made a combined total of $276,538. The OSD report lists the two executive directors of the company as having made only $154,473.
The following chart, based on COFAR’s survey of some 250 providers, shows 30 of the providers with the top earning CEOs (click on it to enlarge).
Sara Duzan’s guardian was formerly against the use of restraints on her
The court-appointed guardian for Sara Duzan, who is now supportive of her care in a group home where Sara has been subjected to restraints and seclusion, strongly opposed the use of those methods for controlling her behavior in two previous publicly funded residences.
Emails and other records in the case show that both Lynne Turner, Sara’s guardian, and Turner’s husband, Michael, were highly critical in late 2011 and early 2012 of Sara’s care and treatment at the Spaulding Youth Center in New Hampshire and the Kolburne School in New Marlborough, MA. In addition, Michael Turner, who was the attorney for Sara’s family until December 2011, criticized Sara’s previous guardian for having cut off all communication between Sara and her family.
The circumstances of 2011 and 2012 appear to have repeated themselves in the past several months, only it is now Lynne Turner who, as Sara’s guardian, has cut off all family communication with her and appears to be in support of the use of physical restraints on her and enforced seclusion in her current residence operated by Becket Family of Services.
Lynne Turner has billed the family for her guardianship services, but the Duzans have refused to pay, contending they were initially assured there would be no charge for those services and that there was never any court order or agreement that they pay her.
I sent several email and telephone requests to Lynne Turner, asking, among other things, whether she has visited Sara yet in the Becket residence and whether she is satisfied that the staff there are using restraints and seclusion appropriately on Sara. Other than to say in an email that she is a sole practicing attorney, in response to a question about her professional relationship to her husband, Turner did not respond to my questions.
Meanwhile, Massachusetts state Representative Paul McMurtry, whose district includes the Duzans’ hometown of Westwood, said he was committed “to doing everything possible to realize the goal of Sara’s return to her family.” McMurtry called the cutoff in all family communication with Sara “heartbreaking,” and said he finds it “unacceptable” that Sara’s parents have been forced to spend a large portion of their life savings in legal fees in a battle in the probate court system over their daughter’s care.
Guardian says care and treatment plan is appropriate at Becket residence
In a guardianship report filed with the Norfolk County Probate Court on December 13, Lynne Turner stated that Sara’s care and treatment plan in her current residence “appears to be appropriate,” and that the “director and clinical director have been very attentive to Sara’s behavior and needs.” Turner’s report did not mention the use of restraints or seclusion on Sara by that facility. Turner also stated in the report that she had never visited Sara in the Becket residence, in which she had placed her on July 24.
Sara was placed in physical restraints in the Becket residence 37 times and was placed in seclusion 59 times between last July and November, according to clinical records filed with Turner’s guardianship report.
Turner, who was appointed Sara’s guardian in December 2011, has upheld restrictions on all family contact with Sara in her current residence. The Duzans have been prohibited from visiting her since last July and from contacting her in any way since before Thanksgiving. Turner further prevented the family even from sending Sara presents at Christmas; and Sara’s mother, Maryann, says flowers sent by the family to Sara were not given to her.
Maryann Duzan contends that the reason for the latest cutoff in all family contact with Sara has been to prevent the family from learning more about the extent of the use of restraints and seclusion on Sara in her current residence and the effect those techniques are having on her. Restraints, in particular, have become increasingly controversial, and have been found to cause injury and death in some instances to persons subjected to them.
“We just want our daughter back,” her father, Paul Duzan, said. “We’re very concerned about what’s happening to her, and we’re not even allowed to ask about it.”
Sara, now 22, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from an admission by Maryann that she once slapped her daughter on the cheek, and the conclusion of a probate judge that the family has been uncooperative with providers in caring for her.
Maryann says she slapped Sara lightly because Sara was acting aggressively while at home and was threatening to throw a radio at her. Her admission of the slap, however, led to an investigation of the Duzans by the Disabled Persons Protection Commission, which then filed motions in probate court to limit the family’s guardianship of Sara. In 2010, a probate court judge ruled the family unfit as guardians, but nevertheless characterized the Duzans as a loving family toward Sara.
Maryann maintains that while Sara was in their care, the family never used restraints on her even when she had behavioral issues at home. The Duzans and many other families with children with Smith Magenis Syndrome maintain that the use of restraints, in particular, on persons with the syndrome is counter-productive and actually makes their behavior more violent.
Guardian said restraints in previous residences were abusive
In 2011 and 2012, Lynne Turner appeared to have been in strong agreement with the Duzans that restraints used on Sara were inappropriate and counter-productive. In a January 24, 2012 email, written shortly after her appointment as Sara’s guardian, Turner stated that Sara “has been abused in two programs.” Turner’s statement was in reference to allegations by the Duzan family that Sara had been abusively restrained at the Spaulding Youth Center between 2008 and 2010, and at the Kolburne School in 2011.
Turner’s January 2012 email alleging abuse of Sara in the two programs was written to Aaron Ginsberg, a staff attorney for the New Hampshire Disabilities Rights Center, who found that the Spaulding Center had subjected Sara to hundreds of inappropriate restraints between 2008 and 2010. Ginsberg noted that Sara frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg stated in a DRC memo.
Photo taken by Maryann Duzan of injuries to Sara’s arms, which Maryann claims were the result of physical restraints used on her at the Kolburne School in 2011. At the time, Lynne Turner, now Sara’s guardian, was highly critical of the use of restraints on Sara.
Photo taken by Maryann of injuries to Sara’s right foot, allegedly resulting from restraints used on her at the Kolburne School in 2011.
Complaints alleged abuse at Spaulding and Kolburne
Lynne Turner’s January 24, 2012 email to Ginsberg included an attached draft document, which echoed Ginsberg’s findings regarding the restraints used on Sara at Spaulding. The document was a draft complaint to the director of the Bureau of Special Education Appeals, charging that Sara was being “brutalized” at the Spaulding facility, and that the Westwood School District, which was then providing her special education services, had failed to investigate the alleged abuse.
The allegations in the draft BSEA complaint were originally made in a legal claim, sent by Lynne Turner’s husband, Michael, to Governor Deval Patrick and Attorney General Martha Coakley on March 11, 2011. Michael Turner, with whom Lynne Turner shares a law office in Marion, MA, was working at the time as the Duzans’ attorney in their probate court battle over Sara’s care and guardianship. His claim announced that he intended to file a $5 million lawsuit against DDS and the Disabled Persons Protection Commission on behalf of the Duzans in connection with the alleged abuse of Sara at the Spaulding and Kolburne facilities. The lawsuit was never filed.
The draft complaint to the BSEA and Michael Turner’s legal claim both alleged that Sara was being restrained for up to 70 hours a week “in dangerous restraints,” and that she was “hit, tripped, locked in her room (at the Spaulding facility) and routinely demeaned by Spaulding Staff on Facebook and in person.” According to the documents, Maryann and Paul Duzan “reported this action to the responsible agencies, including Westwood (the Westwood School District), who left her at Spaulding for months of continued abuse after the egregious physical and emotional abuse became known.”
The draft BSEA complaint and Michael Turner’s claim added that:
Quite often, Sara was restrained naked, by male staff, and female staff just stood by and watched. The staff commented about Sara regularly on their Face Book pages. All of this information was brought to Westwood’s attention but Westwood did nothing. Westwood allowed the cruel torture to continue not only in violation of Massachusetts’ Law but Federal Law and the International Treaty the United States signed against torture. Westwood did not care and did nothing; Westwood continued to blame the parents…
…This pattern is seen during Sara’s elementary years when Westwood built a box in Sara’s classroom in which to dump Sara, in which she would scream for hours and no one would care for her or help her. Westwood never informed the parents of this cell nor was this cell in the IEP (Individual Education Plan for Sara) or in a behavior plan the parents signed. This cell was only discovered by the parents when Sara came home with some of her teeth in a plastic bag. Sara lost a number of teeth while in the cell, urinated on herself because they would not let her out. The abuse Westwood visited upon Sara, at Spaulding, was and is only part of the years of abuse perpetrated upon Sara by Westwood.
Michael Turner’s claim also alleged that at the Kolburne School, Sara became infected with MRSA and ringworm, and that “the DPPC (Massachusetts Disabled Persons Protection Commission) has done nothing about protecting Sara from the mistreatment at Kolburne and has arbitrarily screened out all complaints out (sic).”
Earlier, in a November 16, 2011 email, prior to her appointment as Sara’s guardian, Lynne Turner offered advice to Maryann Duzan on seeking an investigation by the Disability Law Center, a federally funded legal advocacy organization, of Sara’s care at the Kolburne facility. In her email, Turner criticized both the Massachusetts Department of Developmental Services and the Disabled Persons Protection Commission for allegedly failing to respond to the Duzans’ requests that the two agencies investigate Sara’s care at Kolburne. Turner advised Maryann Duzan to say she had requested an investigation of Sara’s care by the Disability Law Center:
… because DPPC and DDS did not exercise their investigatory powers appropriately. They clearly failed to exercise due diligence in the investigation of Sara Duzan’s mistreatment and her injuries and failed to keep her safe. The Disability Law Center has pictures of Sara’s injuries which substantiate the abuse and neglect suffered at the hands of Kolburn (sic) staff which DDS and the DPPC have totally ignored and it would appear so has the Disability Law Center.
A photo of Sara at about the age of 10. She lived at home until the age of 18. The family says they never used restraints on Sara. The use of restraints on persons with Smith Magenis Syndrome has been criticized as counter-productive.
In 2009, the Duzans attempted to enlist the DPPC and DDS in investigating their abuse allegations. Both the DPPC and DDS, however, instead went after the Duzans themselves, accusing them of abusing Sara and causing her emotional distress. None of those allegations has been upheld, other than the charge that Sara’s mother, Maryann, had slapped her on the cheek on one occasion in 2009.
The draft BSEA complaint, attached by Lynne Turner to her email to Ginsberg, and Michael Turner’s claim to the governor and attorney general both characterized the allegations against Maryann and other family members of abuse as “egregiously false,” and stated that they had led to the removal of the Duzan family members as Sara’s guardians.
Maryann Duzan says the Disability Law Center declined the family’s requests in 2010 and 2011 to investigate Sara’s care at Spaulding and later Kolburne. Last week, the family contacted the Disability Law Center once again, seeking an investigation of Sara’s current situation.
Michael Turner alleged Sara was “brutalized” at Spaulding and Kolburne
In June 2011, Michael Turner filed a motion with the Norfolk County Probate Court to remove Sara from the Kolburne School, stating that Sara was being mistreated there. In his motion, Turner maintained that in a previous special education program in a public school in Arlington, MA, Sara had not been subjected to any restraints, but that “Spaulding and Kolburne brutalize Sara with restraints day after day.” Turner added that: “Kolburne now claims the injuries in the photos are self-inflicted wounds. One can only wonder what this brutal behavior by the various staff members has done to damage Sara emotionally, physically and socially.”
Michael Turner also alleged that Sara’s then guardian, Daniel Smith, the executive director of the Arc of Greater Fall River, had done nothing about the alleged abuse inflicted on Sara at Kolburne, and that Smith had inappropriately cut off all contact between Sara and her family. Turner’s motion stated that the cutoff in communication:
…only continues the outrageous abuse Kolburne has suffered (sic) upon Sara which Dan Smith has pictures of and written reports of each incident per the Department of Education Regulations.
The only possible reason for Dan Smith to deny parental access to Sara Duzan is so they will not lean of the ongoing abuse of Sara which Daniel Smith has known of since Sara was at the Spaulding Center and did nothing.
Michael Turner’s motion to remove Sara from Kolburne was denied by Probate Court Judge Angela Ordonez, resulting in an additional six months of confinement for Sara at the facility; however, Sara was returned to her parents’ home in December 2011 on Lynne Turner’s order as Sara’s new guardian. She lived at home until January 2013 with no state services or state-agency scrutiny, according to Maryann. At that point, Lynne Turner placed her in a residential program in Brewster where she remained until she turned 22 last July. Turner then placed her in the Becket residence, which is a DDS-funded facility. The Duzans say they objected to the Becket placement, requesting that Sara be returned home, but Turner denied their request.
On the home page of Michael Turner’s law firm website, a video from the Nancy Grace show contains a highly critical news feature about teachers in the Barnstable School District using physical restraints on autistic children. Michael Turner is seen commenting in the video that by placing one particular child in restraints, a teacher was “training her to become a very violent child.” The website states that Michael Turner “has been representing children and their families in school related issues for many years in the areas of Special Education Services (and) rights and appeals of deficient services…”
In an email sent to Lynne Turner on January 28, I asked whether she supported her husband’s statements about restraints in the video on his website. As noted above, I received no response to that question or to a question about her position on restraints at the Becket residence.
The family has declined to pay Turner for guardianship services
The Duzan family has declined to pay for Lynne Turner’s guardianship services since she was appointed as Sara’s guardian by the probate court in December 2011. The family contends the court order contained no provision for payment of Turner and that it is not their responsibility to pay her. The Duzans also contend that Turner has not been acting in Sara’s best interest by allowing her to remain in the Becket residence and by cutting off their communication with her.
Turner sent a bill to the family for payment for guardianship services, dated June 7, 2012, for $4,210. The bill claimed roughly 77 hours of work done by Turner, and 7 hours by a paralegal in her firm, both at a $50-per-hour rate, since Turner’s appointment as guardian in December 2011. Turner initially proposed a contract for her guardianship services for Sara that would have required the Duzan family to pay fees of $200 per hour to Turner, $200 per hour to another unnamed attorney in her firm, and $75 per hour to a paralegal and $25 per hour to a clerk in the firm.
The proposed contract was signed by Lynne Turner, but the Duzans refused to sign it. Maryann and her son, David, said they had been assured by Michael Turner, prior to proposing his wife as Sara’s guardian, that there would not be a charge for her services. Lynne Turner’s proposed contract, however, referred to a court order that the family pay for Turner’s guardianship services, but Maryann maintains there was never a court order to that effect.
Lynne Turner subsequently proposed a contract for guardianship services that specified a $50-per-hour charge to the Duzans for her services, $50 per hour to another unnamed attorney in the firm, $25 per hour to a paralegal, and no charge for clerical services. The Duzans refused to sign that contract as well.
The Duzan family recently retained attorney Thomas Frain, who is COFAR’s president, to represent them in their efforts to return Sara home. In response to a request from Frain to Lynne Turner for records relating to Sara’s care in the Becket residence, Turner responded that she would provide the records upon payment of $10,000 to her. She said that the requested payment included $5,000 for producing the records themselves and an additional $5,000 for her unpaid guardianship services for Sara Duzan.
“Ten thousand dollars is a high price to pay to find out if your loved one is alive, well and being cared for,” Paul Duzan said.
To contact the governor’s office about this case:
Contact info for the Governor’s Office: Massachusetts State House Office of the Governor Room 105 Boston, MA 02133 Phone: 617.725.4005 888.870.7770 (in state) Fax: 617.727.9725 TTY: 617.727.3666 Email: constituent.services@state.ma.us
Also, please sign our petition to the governor to bring Sara home on change.org. Thanks!
Father frustrated for years in gaining guardianship of his intellectually disabled son
Stan McDonald readily acknowledges that his mildly intellectually disabled son, Andy, was dangerously out of control one evening nearly 25 years ago when, living with his father and stepmother, he made threats in two instances to two female children who were their neighbors in Sherborn, MA.
Andy’s behavior has improved greatly since then, McDonald says. Yet, due to a series of misinterpretations about the incidents that occurred in 1990, Andy is still considered to this day by both his court-appointed guardian and the probate court to be a danger to his community. As a result, he has been prohibited from ever returning to his hometown, and Stan has been deemed unfit to be his guardian for advocating for supervised home visits for him.
In many respects, Andy’s case is similar to that of Sara Duzan, a young woman who, as we’ve reported, has been living in a group home with no contact permitted with her family. Both cases appear to illustrate the dangers to family members of giving up guardianship of an incapacitated person for whatever reasons, and they show how court-appointed guardians fail to act in the ward’s best interest in many of these situations. In 1986, Stan and his former wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him.
The history of Andy’s care is one in which court-appointed guardians and clinicians have consistently overridden the wishes of his family members, leading, in many cases to disastrous results.
In Andy’s case, contact with Stan and Andy’s stepmother, Ellen, has not been cut off, although their contact is restricted. Stan and Ellen are allowed to visit him in his group home in Westborough two to three times per month, and Stan, now 78, is allowed to call Andy, now 46, once or twice a week on the phone.
Stan, Andy, and Ellen McDonald on an outing from Andy’s group home in 2012.
Stan and Ellen are also permitted to take Andy on outings in the community near his group home. But the position of the probate court and of Andy’s current guardian, Dennis Yeaw, a Shrewsbury-based attorney, is that Andy is sexually dangerous even though he was never charged with a sexual offense. Yeaw has had some 100 wards in addition to Andy.
Not only is the prospect of Andy’s ever returning home not even to be discussed, but a probate court judge ruled in 2006 that Stan McDonald must personally tell his son, in the presence of clinicians, that his son would never be allowed to go home again. McDonald said he has refused to say something like that to Andy, contending it would severely depress him and would be a violation of their rights of freedom of speech and association.
Andy has not exhibited any significant behavioral problems in close to a decade and has been taken on community outings to many places other than his home without any behavioral incidents, according to Stan and to notations in his clinical care plan. Yet, he has in the past told clinicians that he has had sexual fantasies about children; and that, combined with a mistaken probate court finding that he was arrested for sexual offenses in 1990, appear to have led the court to ban him for life from visits home.
In 1995 and 1996, Andy was allowed three supervised visits to Stan and Ellen in their Sherborn home, and those visits took place without incident, according to Stan. After that time, however, the visits were prohibited for no clear reason, Stan says.
Misrepresentation of his arrests
In a 2006 ruling in which he denied Stan’s bid for guardianship of Andy, Middlesex County Probate Court Judge Edward Rockett stated that Andy had been arrested in 1990 for sexual assaults of three young girls who lived across the street in Sherborn. That was not true, however. Two arrest reports from that year tell a much different story.
Andy was arrested in May 1990 for threatening an unidentified person during a telephone call, according to the district court record. The nature of the threats was not disclosed. In July of that year, he was charged with disturbing the peace in downtown Sherborn after he followed a young woman and allegedly threatened to kill her father, according to a Sherborn Police Department report. That same day, he was charged with assault after he punched Ellen, his stepmother, the same report stated. Stan says Ellen had driven Andy to the police station for his own protection after the incident in downtown Sherborn. On the way, he says, Andy was flailing his arms in protest and struck Ellen unintentionally.
There is no indication in the police reports that Andy ever sexually assaulted anyone. Immediately after the July 1990 incidents, Stan McDonald had Andy committed to McLean Hospital in Belmont.
Andy’s care under court-appointed guardianship was marked by inappropriate placements and decisions
Over the years, Andy has been subjected to inappropriate residential placements and treatment, in many cases because a series of court-appointed guardians, state agencies, and providers made the wrong decisions regarding his care, Stan says. Stan makes an exception for Stefan Grotz, the first in the series of Andy’s guardians, who was appointed as part of the agreement between Stan and his first wife in their divorce. Grotz authorized Stan to be his personal representative in Andy’s care, but Grotz stepped down as Andy’s guardian in 1991 because he felt he lived too far away from Andy’s then placement at Westborough State Hospital.
After he was admitted to McLean Hospital in 1990, Andy was first sent to Taunton State Hospital when McDonald’s insurance ran out, and subsequently to Westborough State, a Department of Mental Health facility. Stan had originally applied in 1989 for a placement for Andy in a Department of Developmental Services facility, but his eligibility was originally denied. Stan appealed, and DDS approved Andy’s application as a client in 1990; but by that time, Andy was in Westborough State, where he remained as a DDS client until 1993.
The Westborough State placement was inappropriate. Andy had earlier been found not to be mentally ill by DMH, which had determined that he would actually be harmed if housed in a facility for persons with severe mental illness. That turned out to be the case. He “deteriorated” in Westborough State Hospital for three years, Stan says. Stan was prohibited from visiting him for months at a time. In January 1993, Andy was sexually assaulted at the hospital by another patient. When the hospital refused an independent investigation, Stan says he filed a complaint with the Disabled Persons Protection Commission, which found the hospital negligent.
According to Stan, when Andy was admitted to Westborough State, he was non-psychotic and medication free. But after months of confinement in a locked ward with severely mentally ill and violent patients, Andy acted out in frustration, kicking over a trash can at one point. The staff’s response was to begin medicating him, which only increased his frustration and depression, resulting in increasing medications, in a vicious cycle.
Stan says DDS finally placed Andy in his current group home in 1993. Today, he says, Andy’s care in the Community Resources for Justice group home is very good, and Stan’s and Ellen’s relationship with the current staff in the residence is excellent. However, the care in Andy’s early years there was frequently substandard.
In a sworn affidavit in 1999, Cameron Fraser, a staff worker in the group home in 1994 and 1995, stated that a manager of the residence told him in December 1994 that “‘he (Andy) brings in a lot of money to this program,'” and that it was “necessary to document in the daily log regular behavioral instances” in order to ensure that Andy would remain in the program. Fraser said he observed a number of instances in which the manager deliberately incited Andy into fits of rage, which required the staff to place him in restraints.
Fraser also stated that the cupboards in the group home were frequently bare of food while he was there and the residents were often fed “the barest of meals, lacking basic nutritional values…” In addition, Fraser said that while other residents of the facility were allowed out on un-escorted walks, Andy was confined to the premises because he was considered a threat to the community. However, Fraser said he always found Andy to be “respectful and courteous to all around him.” Fraser further noted that Andy’s spirits were always buoyed by visits from Stan and Ellen.
Stan says that for many years, Andy’s dental care was inadequate as well, and that court-appointed guardians did little or nothing to improve that. In 1994, after his admission to the Community Resources for Justice group home, seven of Andy’s teeth were found to be badly decayed, but nothing was done about that for five years.
Around 1995, Stan says, he persuaded Andy’s then guardian to have Andy sent to Andy’s family dentist, who was shocked at the condition of his teeth and wrote to the then director of the group home, suggesting a stringent regime of dental hygiene for Andy. Stan says the group home director not only ignored the dentist’s advice, but ordered that Andy not return to the dentist. In 1999, Andy had to have two teeth extracted, and in 2007, he had to have three additional tooth extractions and multiple fillings under general anesthesia.
In addition, Andy was over-medicated for many years with Stelazine, an anti-psychotic drug, which caused him to develop Tardive Dyskinesia, a disorder resulting in involuntary, repetitive body movements. Court-appointed guardians, he says, did little or nothing to address that problem either. Stan personally got a court order and paid for an independent evaluation of Andy’s medications. This resulted in discontinuing the Stelazine and replacement of the prescribing doctor.
Today, the major problem with Andy’s group home is that it has become crowded with the addition of a fifth resident, and some of the residents have mental illness and escape impulses, making it necessary to keep the residence locked and the door alarmed, Stan says. As a result of the intense supervision needed for those residents, Andy gets few opportunities for fresh air and exercise. Also, the other residents of the group home are either 20 years older than Andy or are less functional intellectually and behaviorally, he says.
Supporters urge restoration of Stan McDonald’s guardianship of Andy
In May of last year, State Representative David Linsky, wrote a letter in support of Stan’s appointment as Andy’s guardian, noting that he has 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, wrote to the Department of Developmental Services in June to say that he has 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. Stan McDonald maintains that if he was appointed as Andy’s guardian, he would keep Andy in his present program and would agree to having Andy’s supervised during visits home.
On January 6, I sent an email to Scott Harshbarger, Board president of Community Resources for Justice, the nonprofit organization that operates Andy’s group home, and asked whether he would consider supporting supervised home visits for Andy and the restoration of Stan McDonald’s guardianship of his son. I have not received a response from Harshbarger, who is a former Massachusetts attorney general and former president of the citizens watchdog group Common Cause.
Questions raised about Andy’s dangerousness
In his 2006 ruling, Judge Rockett cited testimony from the clinical director of Andy’s group home that Andy had told him he had had sexual fantasies about children and was therefore sexually dangerous. Rockett concluded that returning home to Sherborn had “acquired a magical meaning for him (Andy)” and that he must never be allowed to return there. But Rockett also acknowledged in his ruling that there was testimony as well that Andy “will always say what he thinks other people want to hear. This causes his statements to be very inconsistent. He will say one thing to his father and the opposite to a staff person.”
McDonald contends the misstatement in Rockett’s ruling that Andy had assaulted three young girls was based on misinformation provided to the judge by the Department of Developmental Services. Andrew’s court-appointed guardian, Dennis Yeaw, however, has consistently cited Rockett’s ruling in denying home visits to Andy. In an email to COFAR, Yeaw defended his position and maintained that “Mr. McDonald is the only person, well maybe Mr. McDonald’s wife as well, who thinks it’s OK for Andy to go to Sherborn.”
But not all clinicians have supported the ban on Andy’s returning to his hometown. In 2000, Ronald Ebert, a psychologist, recommended that the staff of Andy’s group home try a “trial visit” to the Sherborn Inn to hear Stan, an acclaimed jazz musician, play in his band if it could be demonstrated that the persons Andy was accused in 1990 of threatening no longer lived in town. In fact, Stan says, those persons had moved away as of that time. “If such visits can be managed successfully, there is no reason why they could not be built into his visit schedule…,” Ebert wrote. But Ebert’s recommendation was never heeded, and visits to the Inn have not been allowed.
There is no doubt that the conditions under which Andy lives have greatly improved in recent years. But it seems to us that those in charge of Andy’s care still haven’t fully recognized the progress that Andy himself has made over the years.
There is no question that the charge that Andy is sexually dangerous is an explosive one. But the record regarding this charge contains misinformation and contradictions. The insidious nature of a charge of sexual dangerousness, if it is untrue, is that it has been used and could be used at any time in the future to restrict Andy’s freedom to a much more extreme degree than is even now the case.
Stan notes that a clinical team report or assessment was done of Andy’s level of disability in 2012 for the probate court, but neither Stan nor Ellen were interviewed for that assessment. The probate court’s instructions for completing clinical team reports, however, state that clinicians should interview the individual “and persons who know him/her well” (emphasis in the original) in conducting those assessments. Neither Stan nor Ellen were provided with a copy of the report or informed of its conclusions.
We think a new and independent clinical evaluation should be done that takes into account Andy’s current record of behavior and includes input from his family and others with knowledge of Andy. We would also hope that such a report would be provided to Stan and Ellen for their review and comment.
After all, it is only family members in this case — namely Stan and Ellen — who have shown they have the knowledge and unconditional love and support needed to provide the best possible care for Andy.
Correction to previous post on the Duzan case
On December 17, I published a post on this site, which referred to a proposed contract with Lynne Turner, a court-appointed guardian for Sara Duzan.
Turner, who was appointed Sara’s guardian in December 2011, proposed a contract for her guardianship services for Sara that specified fees to the Duzan family of $200 per hour for services from Turner, $200 per hour for services from another unnamed attorney in her firm, and $75 per hour for a paralegal and $25 per hour for a clerk in the firm. The proposed contract was signed by Turner. It was incorrect of me to have added those hourly charges together to state that the total proposed hourly charge to the Duzans was $500. I regret the error. The post has been corrected.
The politically incorrect idea of bringing congregate and community care together
Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.
In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community. A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.
Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades ago.
In the second initiative, the Arc of Jacksonville in Florida has been awarded state funding and tax credits to help construct a “planned neighborhood” in that state for adults with intellectual and developmental disabilities, according to The Florida Times Union. The newspaper reported that the “Arc Village” will house about 120 adults – ages 18 and older – in 97 one- and two-bedroom apartments. The $17.7 million project will allow residents to “live, work, shop, recreate, and socialize,” in one place.
Unfortunately, neither of these innovative initiatives would be likely to move forward in the “progressive” state of Massachusetts, and neither may get the backing of the Obama administration. That’s because each of the proposals envisions providing services to a large number of people in one location — a non-starter to the ideological opponents of “congregate care.”
Congregate care, you see, is “institutional,” and therefore bad by definition for people with developmental disabilities. It’s apparently better that they live in small group homes or apartments dispersed throughout the state. We happen to think that placing everyone in dispersed group homes or apartments is actually a recipe for isolation and a new form of warehousing of people with developmental disabilities, all the while lining the pockets of the executives of hundreds of state-funded, corporate providers. (More about that in a coming post.)
But the Patrick administration in Massachusetts has voiced its opposition to congregate care and has moved to close four out of six remaining developmental centers in this state. Two of those centers have now been shut and most the residents have moved either to one of the two remaining centers or to group homes throughout the commonwealth. Longstanding proposals by advocates of those developmental centers to more effectively merge them with their surrounding communities — similar to the Delaware proposal for the Stockley Center — were all rebuffed by the Patrick administration.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) are moving to change their definition of federally reimbursable community-based care to exclude even group homes that happen to be located on the grounds of, or even near to, a public institution such as a developmental center. And the National Council on Disability has declared that an “institution” is a “facility of four or more people who did not choose to live together.” The NCD’s definition, which applies even to many group homes, was contained in a report in 2012 that states in its first sentence that closure of all such “institutions” should be “a top public policy priority in every state where such institutions exist.” The NCD advises the president and Congress on disability issues.
It’s hard to imagine the NCD supporting the Arc of Jacksonville’s proposal, in particular, which would establish a single setting, albeit a “neighborhood,” which would house 120 clients. And the Stockley Center proposal would not appear to conform to the CMS’s proposed definition of community-based care.
It seems to us, though, that the inclusive approaches being proposed in Delaware and Florida represent the future of care of the developmentally disabled in this country. Both proposals appear to recognize that congregate care is a valid option for people who want and need it, and that it can coexist with, and even be a part of, community-based care. Note that we’re not saying congregate care is right for everyone or that it should replace care in smaller settings.
The administration of Delaware Governor Jack Markell certainly appears to recognize that a congregate care center such as Stockley, which meets federal Intermediate Care Facility ICF/DD) standards, is worth maintaining as a residential option for its current residents. The Delaware state task force report states among its “general principles” that its proposal for the Stockley Center would include “a commitment to maintain and build upon a peaceful environment that the people at Stockley Center currently enjoy.”
Rita Landgraf, secretary of the Delaware Department of Health and Social Services, was quoted in The Wilmington (DE) News Journal as saying: “We do have individuals who still live here on site. It is critically important that we bring inclusion to them. This was not a discussion of closing Stockley. Sometimes I hear that, out in the public. But we are not closing Stockley.”
Among the specific task force proposals for the Stockley Center that would establish the center as a critical component of community-based care in Delaware are the following:
- Creation at the Stockley facility of a “Center for Excellence,” which would offer “integrated health support and disease prevention services to communities for which health services are hard to access.”
- Creation of a facility at Stockley to support respite care, both for individuals with disabilities in the community system and caregivers.
- Expanding the use of the Stockley pool or other therapeutic facilities for individuals with disabilities “first in Sussex County (DE) and beyond, as feasible.”
- Creating an “intergenerational multi-use center for wellness that supports active living and wellness, including classes for smoking cessation, fitness, nutrition, behavioral health, obesity, cardiovascular disease and stress management.”
- Developing fully accessible community vegetable gardens for an “integrated community” of county residents, including low income families; and hosting a farmers’ market.
- Creating a “model of mixed-use development”on the Stockley campus site, including affordable housing, stores, restaurants, dental and medical, and recreational facilities.
- Creating a training center to provide professional development for medical and care providers.
- Encouraging schools to use the Stockley property for nature and science instruction.
- Providing education, support, life skills and vocational or job training programs for people with disabilities.
- Creating a center for volunteer and nonprofit groups.
- Creating an outdoor trail system for users of all ages and abilities.
Contrast the excitement and vision of that approach with Massachusetts where we’ve seen only the systematic dismantling of congregate care for people with developmental disabilities. We will soon be down to two remaining ICF-level care centers, and what remains of state-operated care is under siege as facilities and services continue to be privatized. It’s refreshing to know that not all state administrations have that mindset, and that in some places, new ideas are being tried by people who are not blinded by outdated ideologies. We, however, are being left in their dust.
Questions surround care of Sara Duzan in group home
Sara Duzan has been placed in physical restraints in a group home 37 times since she was moved there on July 24, and the restraints continued through the month of November, according to staff records provided to the Duzan family.
A “baseline behavioral data” report on Sara’s care, dated December 11, states that there were 7 restraints imposed on Sara over a 7-day period in July; 10 restraints in August; 5 in September; 7 in October; and 8 in November. The report also indicates that behavioral episodes leading to the seclusion of Sara in her room in the Westminster residence also continued to take place each month. There were 7 such episodes in July; 16 in August; 9 in September, 15 in October, and 12 in November.
The report of the clinical staff at the state-funded Becket Family of Services residence appears to raise questions as to whether Sara has made progress since she was placed there on July 24. Since then, contact with her family was sharply restricted and then cut off entirely by the provider and her current guardian. The Duzan family, who lost their guardianship of Sara in 2009, is fighting to regain their guardianship and to bring her back to their home.
Sara’s bedroom in her family home in Westwood, where she lived for over 18 years of her life. She was at home until 2008, and later from November 2011 until January 2013. In her current group residence run by Becket Family of Services, she is living in a room with only a bed, box-spring, and some personal items. She destroyed many of the other furnishings in the room in what her mother believes have been repeated attempts to escape.
In a report filed December 13 with the Norfolk County Probate Court, Sara’s current guardian, Lynne Turner, contended that Sara was improving at the Becket residence and her behavior was becoming “calmer and less agitated.” But that assessment seems to be at odds with the staff report showing that episodes leading to restraints and seclusion have been continuing.
Sara has a rare genetic disorder called Smith-Magenis Syndrome (SMS), which is characterized by behavioral outbursts and intellectual disability. Parents of children with SMS from around the world have commented on this blogsite that using restraints to control behavioral outbursts of persons with SMS is counter-productive and usually makes the behaviors worse.
Court-appointed guardian has not visited the residence
Turner indicated in her report to the court that she has never visited Sara in the Becket residence where Sara has lived since July. Turner stated that she intended to visit her on one occasion but was ill, and that she planned a visit “within the next few weeks.” Turner also stated in the report that Sara was not taking any ant-psychotic medications. Yet the staff records indicate that Sara has been taking anti-psychotic or psychotropic medications, noting that she had refused them on 14 occasions since July.
Questions linger over cut-off of family contact
The latest records also appear to raise questions about the reasons given for the complete cutoff in family communication and contact with Sara.
Turner stated in her report to the court that family communication with Sara had been terminated because Sara became so agitated after calls from the family members she acted out and had to be restrained “on more than one occasion.” It was determined, Turner wrote, that Sara’s reaction to family phone calls caused a safety problem to Sara and staff. Turner added that “parental contact refers to visits, phone calls, gifts, and any other attempt to contact Sara.” The family was therefore not even permitted to send Christmas gifts to Sara this month.
A staff clinician’s report, however, indicated only one instance in which Sara allegedly became violent after a family call; and that clinician’s assessment that Sara was acting violently at that time appears to be contradicted by a statement in a police report that Sara appeared shy and timid.
Robin Thompson, a Becket clinician, stated that following a call with her parents on November 19, Sara “exhibited violent behavior over a span of hours” and had to be restrained. Thompson stated that no further calls from the family have been permitted since that incident, at her recommendation.
A phone call with Sara’s father, however, appears to have taken place on November 18, the day prior to the date noted by Thompson, according to a Westminster Police report. According to the police report, Sara told her father she had been hit in the mouth by a staff member, and the family then called police to the house. The police report stated that when the officers arrived, Sara was “shy and was hanging on with a friend,” another client. The report indicated that the police were not able to establish that Sara was assaulted by anyone on the staff, although she did have small scabs on her lip and toe.
According to the police report of the incident, Sara said she had been hurt about a week previously after the staff had broken down the door to the bathroom. Another client told police Sara had locked herself in the bathroom and was threatening at the time to jump out the window.
Thompson’s clinical report stated that in calls to her mother and father, “Sara focuses on the negative.” Thompson speculated that Sara was “conditioned” to do this because she has stated that “ if she is ‘bad’ she can tell her family and she can go home because ‘Becket won’t keep me.’” As a result, Becket initially set rules that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her. All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end. Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
In her report to the court, Turner maintained that it was Sara’s parents who were failing to abide by the telephone call “protocol,” and that this was causing Sara to become agitated.
Maryann Duzan, Sara’s mother, denied that the family’s phone calls with Sara were causing her to become agitated. She said she believes the cause of Sara’s agitation has been her “imprisonment” in the Becket residence, and possible abuse that she has suffered there. She said the phone calls were discontinued because Sara had made statements during the calls about being assaulted, restrained, and living in poor conditions. In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.
Lack of a transition before placement in program
It appears that Sara was placed by Turner in the Becket residence without an adequate transition period, which Maryann maintains should have involved her family. The sudden placement appears to have resulted in a violent episode of self harm and property destruction on Sara’s second day in the residence that necessitated a call by the staff to the police.
In her clinician’s report, Thompson described the episode on Sara’s second day at Becket, saying Sara barricaded herself in the room, ripped out the light fixtures, and attempted to electrocute herself.
Maryann Duzan maintains that Sara was “dumped” at the Becket residence with no advance notice to her on her 22nd birthday. “She thought she was coming home for good on her birthday,” Maryann said. “They didn’t tell her she was going there (to the Becket residence), nor were we allowed to talk to her.” Since then, Maryann said, the family’s requests to visit Sara on Mother’s Day, Father’s Day, and her birthday have all been denied.
Maryann also said most of the furnishings in Sara’s room in the Becket residence have been removed. A report filed by the police in September stated that Sara’s room consisted of a “bed and box-spring and linens and a few personal items.” Maryann maintains that Sara had “destroyed other furniture in the room as she has fought to get out of this imprisonment.”
Since July, Thompson said, “Sara has exhibited some progress,” including some success in community outings, and widening her choice of foods; but her assessment appeared to stop short of Turner’s more positive assessment that “Sara’s behavior is becoming more appropriate and less assaultive.”
Thompson stated in her report that Sara engaged in “severe self harm” and property damage after a dental visit on Sept. 11. That episode does not appear to have been related to contact with her family.
Community outings
The Becket baseline behavioral data report indicates that Sara earned 10 weekly outings from the Becket residence due to good behavior since July. According to Thompson’s clinical report, the outings have consisted of Sara’s being taken to a Burger King drive-thru; “short hikes in a local park”; a visit to “Michelle’s” in November to purchase items that were pre-ordered; and a visit to a mall in December and to a drive-through at a Dunkin’ Donuts. She had been “successful in all community outings,” the report noted.
Maryann Duzan maintained that the community outings described by Thompson appear much more restricted than the access Sara had in the community when she lived at home. Sara had volunteered at Animal Rescue League of Boston from 2004 to 2006, and never had any behavioral problems there, according to a letter of reference from the organization. She also participated in a special needs religious education program at St. Catherine’s Catholic Church in Norwood. Maryann said Sara also enjoyed volunteering with her at Rosie’s Place in Boston and serving dinner to abused and homeless women there. “Now (as a resident of the Becket residence) she gets to drive through a Burger King,” Maryann contended.
Turner’s guardianship report stated under the heading “future arrangements,” that over the next 18 months, “Sara will continue to settle in the program and expand her ability to access the advantages this program can provide her.” Nothing is stated in the report about restoring family contact with Sara. Yet, Sara’s separate individual care plan at Becket, dated July 24 and revised September 18, states that restrictions on family contact were not meant to last for more than three months.
Despite the negative assessment of the family’s impact on Sara held by Turner and Thompson, Ronald Ebert, a psychologist hired to evaluate Sara earlier this year, described the family as “concerned and active”; and Gail Quinn, Deputy General Counsel for the Disabled Persons Protection Commission, reportedly stated that she believed the Duzans to be “caring and loving parents who are very involved in their daughter’s life in order to provide her the best.” Even though he ruled the family as unfit to be guardians to Sara because they allegedly did not cooperate with certain providers, Probate Court Judge George Phelan stated in 2010 that the family had an “undeniable love” for Sara. Phalen concluded that “it would be inappropriate for the Court to exclude them completely in decisions affecting Sara.”
Guardian removed Sara’s mother as Social Security rep. payee
Turner stated in her guardianship report that she had terminated Maryann Duzan, Sara’s mother, as Sara’s Social Security representative payee in October because Duzan allegedly never provided an accounting to the court or to Turner of Sara’s funds, and because she allegedly refused to compensate a former residential provider and a Friendly’s restaurant in Hyannis for damage Sara caused to property there while on a community outing. Turner said she has applied to become Sara’s representative payee.
Maryann Duzan responded that she did pay the Friendly’s restaurant $275 in compensation for the damage. She said she filed accountings of Sara’s funds with the Social Security Administration, and was told she did not have to file similar accountings with the probate court because she was not appointed as a conservator for Sara.
We would question whether the Duzans should have been required to compensate the former provider and the restaurant for damage since all family members had been removed as Sara’s guardians and had no control over her by that time.
COFAR is continuing to advocate for Sara’s immediate return to her family. We urge readers to sign COFAR’s petition on change.org, asking Governor Deval Patrick and Department of Developmental Services Commissioner Elin Howe to allow Sara to return home to her family immediately.
Duzan family forced to pay in case that led to cutoff in contact with daughter
The Duzan family has found their four-year battle to regain custody of their intellectually disabled daughter, Sara, and bring her back home, to be extremely expensive.
In arrangements that raise some troubling questions, the family has been required by probate court orders to pay over $13,000 so far to three professionals in the case. Among those payments is $5,000 so far to a Special Master, even though the family was never provided with a written agreement or invoices by the Special Master for her charges.
In addition, the family was required as a result of a probate court order to pay $5,750 to a psychologist to evaluate Sara last May, even though the evaluation was never done and Sara had previously been evaluated by a different psychologist. And the family was required to pay $2,500 for a report on the case in 2010 from an attorney who had been appointed as a guardian ad litem in the case. The attorney made recommendations to the judge regarding a dispute among parties in the case, but the charge for the attorney’s services was given to the family to pay.
Maryann Duzan, Sara’s mother, said the probate court left it up to the three professionals themselves to determine the amounts the family should pay for their services. “It was just a given that our checkbook was theirs,” she said.
The Duzans have refused to sign a proposed contract for guardianship services submitted to them by Sara’s current court-appointed guardian, which specified charges of $200 per hour each for the guardian and another attorney in her law firm in addition to charges for other personnel. “That would have bankrupted us,” Maryann said.
Despite the payments they have made and what they say is their life savings paid in legal fees, the family has seen increasing restrictions placed on their contact with Sara. They are currently forbidden from even contacting her by telephone in her residence. Sara, who has a rare genetic disorder called Smith-Magenis Syndrome (SMS), has been living in a residence run by Becket Family of Services, a state-funded, corporate provider, since July. The family has not been allowed to see her since June.
A photo of Sara taken with Santa at the mall, when Sara was last living at home. She was last at home between November 2011 and January 2013.
SMS is a disorder characterized by intellectual disability and behavioral outbursts. The Duzan family maintains that SMS is poorly understood by many care providers, who often place persons with SMS in confining restraints when their behavior becomes aggressive. The Duzans contend restraints are counter-productive in those cases because they tend to make the behavior worse.
SMS is also poorly understood by the probate court, the family maintains. The court ruled the family unfit as guardians in 2010 because they were allegedly being uncooperative with providers and acting as if they “know best” about Sara’s care. But in the past several days, the family has received an outpouring of support from friends and members of a network of families of children with SMS. More than two dozen members of the SMS network submitted comments to this blog, backing up the Duzans’ contention that restraints should not be used with persons with the disorder, and calling for Sara’s immediate return to her family.
The Duzans say they never used restraints when Sara lived at home, but they are concerned that Sara is being subjected to excessive restraints in her current residence. They also claim Sara was abusively restrained in at least two previous residences run by state-funded providers. In one of those cases, the family’s claims were corroborated by a disability rights center attorney who found that Sara was subjected to excessive and unnecessary restraints between 2008 and 2010 at the Spaulding Youth Center in Northfield, NH.
In a December 28, 2011 letter to attorney Lynne Turner, Sara’s current guardian, Aaron Ginsberg, a staff attorney for the New Hampshire-based Disabilities Rights Center, Inc., stated that there were “at least a couple hundred incident reports (most involving restraints) completed on Sara while at Spaulding.” Ginsberg stated that while the use of restraints may have been appropriate in some of those cases, there were “many instances” where the use of restraints appeared to be inappropriate because the restraints caused physical injury to Sara or “because the threshold of risk of injury to self or others was not met.”
Maryann and her husband, Paul, first relinquished their guardianship of Sara in 2009 after the Massachusetts Disabled Persons Protection Commission (DPPC) began investigating allegations that the Duzans themselves had been abusive toward Sara. However, none of those allegations were substantiated other than an admission by Maryann that she once slapped Sara on the cheek while Sara was acting aggressively on a home visit. The probate court judge, who ruled the family unfit to be Sara’s guardians, concluded in 2010 that the Duzans were a loving family toward her.
Andrea Barnes, the Special Master in the probate court case, was appointed by the court in July to resolve impasses between the family and Turner, Sara’s current guardian. Two days before Thanksgiving, Turner informed the Duzans by email that all further contact either by phone or in person was being “suspended indefinitely” and that the police would be called if anyone from the family or “an agent of the family” attempted to enter the Becket Family of Services residence. Turner stated that this cutoff in contact was being instituted “as per agreement between the program staff and me.”
In his July 17 ruling appointing Barnes as Special Master, Probate Court Judge Patrick Stanton required the Duzans to “come to a mutually agreeable private fee arrangement” with Barnes. Maryann said the family has no written agreement or contract with Barnes to whom they have paid $5,000 since June. Records show the Duzans sent a $3,000 check to Barnes in June and and an additional $2,000 check to her in September. Maryann said the amounts were requested by Barnes, who asked for the initial $3,000 as an “upfront payment.”
Thus far, the family says, Barnes has done nothing to resolve their dispute with Turner over contact with Sara or to act on their request that she be returned home. They also say Barnes has refused to show the family records of Sara’s treatment at the Becket residence. When Maryann Duzan emailed Barnes on November 24 to ask her to remove Sara from the residence because she felt she was being harmed there, Barnes responded only that she had no reason to believe Sara was being harmed, but that she would check in on her “sometime in the next few weeks.”
I sent Barnes an email yesterday, asking whether she supported the decision to cut off all communication between the family and Sara, and whether she was confident that Sara was not being subjected to possibly excessive restraints or otherwise being harmed in the current residence. I also asked if Barnes would comment on her fee arrangement with the family. I had previously left a phone message with her. I haven’t heard back from her.
Turner, who was appointed Sara’s guardian in December 2011, proposed a contract for her guardianship services for Sara that would have required the Duzan family to pay fees of $200 per hour to Turner, $200 per hour to another unnamed attorney in her firm, and $75 per hour to a paralegal and $25 per hour to a clerk in the firm. The proposed contract was signed by Turner, but the Duzans refused to sign it. The contract refers to a court order that the family pay for Turner’s guardianship services, but Maryann maintains there was never a court order to that effect.
I also sent Turner an email yesterday, asking if she supported the cutoff in communication between the family and Sara, and whether she was confident that Sara was not being subjected to possibly excessive restraints or otherwise being harmed in the current residence. I also asked whether she had a justification for what seemed a high proposed fee for her guardianship services. I haven’t yet heard back from her either.
The family paid a total of $5,750 in May of this year to psychologist Ronald Ebert as per a probate court order even though Ebert never evaluated Sara because she refused to meet with him. Nevertheless, the family was billed by Ebert for the research, travel, and other work in connection with the proposed evaluation.
A February 22 memo written by a clinician at the Latham Centers, where Sara was placed from January to July, states that Ebert arrived that day to interview Sara, but never evaluated her because she refused to come out of her room. A May 5 invoice from Psychological Services, Inc., Ebert’s firm, specified a fee of $250 an hour for research into the case, interviewing the family, travel from Newton to the Brewster location of the Latham Centers facility, and preparation of a report. Maryann contends Ebert’s evaluation wasn’t actually necessary because another psychologist had evaluated Sara a year previously.
In his report, Ebert described the family as “concerned and active,” and noted they were frustrated in their attempts to get adequate services for Sara.
Nadell Hill was appointed guardian ad litem by then Probate Court Judge Angela Ordonez in January 2010 to review the co-guardianship of Sara by both Erin Hachey, Sara’s sister, and Daniel Smith, the executive director of the Arc of Greater Fall River. The family was required to pay Hill for his report, which concluded that both Hachey and Smith should remain as Sara’s guardians. Hill’s report concluded that “it is important that Sara’s family should remain involved in Sara’s life and in the decisions being made about her life.”
Much of Hill’s 9-page report concerned allegations from providers and two school system officials that Hachy was not sufficiently independent of her mother, Maryann, to make effective decisions as co-guardian. Maryann was described as being uncooperative with professionals and an “obstruction.” Hachey denied she was controlled by her mother, and said Smith was making decisions without her input. Hill noted in the report that Sara herself said she wanted her sister to remain as her guardian.
During a trial in July and August 2010 on the family’s fitness for guardianship, Smith testified that he probably would have slapped Sara himself under the same conditions that Maryann faced when she admittedly slapped her, according to a brief filed by Suzanna Urukalo, who served as an attorney for Hachey during the trial. Urukalo’s brief added that Gail Quinn, Deputy General Counsel for the DPPC, stated that she believed the Duzans to be “caring and loving parents who are very involved in their daughter’s life in order to provide her the best.” Quinn nevertheless filed motions with the court to remove all of the Duzan family members as Sara’s guardians.
We have already said we believe Sara should be returned to her parents. After examining the lengthy record in this case, we see no reason why Sara is being kept isolated in the Becket residence without any contact with her family. As many of the people who commented on our previous post have noted, this situation is an outrage and a human rights violation. The fact that the family has been forced to pay many of the parties in the case out of their own pocket — and that they have only seen the restrictions on their contact with their daughter tighten — compounds the terrible wrong done to them.
Please sign COFAR’s petition on change.org, asking Governor Deval Patrick and Department of Developmental Services Commissioner Elin Howe to allow Sara to return home to her family immediately.
Family is shut out of contact with special needs daughter
Maryann Duzan and other members of her family lost their guardianship of Maryann’s intellectually disabled daughter, Sara, in 2009, based on an admission by Maryann that she once slapped her daughter on the cheek, and the apparent perception that the family has been too aggressive in advocating for her.
As a result, a series of increasingly restrictive limits has been placed by court-appointed guardians and residential providers on family communication with Sara. Since June, the family has not been allowed to see Sara, who is currently living in a group residence in Westminster, MA, run by a state-funded, corporate provider.
As of late November, the family was prohibited even from talking with Sara over the phone. The family is afraid she is being subjected to what they consider abusive “restraints” by the group residence staff, but they have no way of determining what is actually going on.
Maryann contends her daughter, who is now 22, has been kept a virtual prisoner in the residence run by Becket Family of Services since late July. Sara has a condition known as Smith Magenis Syndrome, a genetic disorder characterized by intellectual disability and behavioral outbursts. The family maintains that the use of restraints to control those behaviors actually makes them worse.
According to the family, the restrictions on their contact with Sara and the removal of their guardianship occurred because they called attention to what they termed abusive restraints placed on Sara in previous residential programs in Northfield, NH, and New Marlborough, MA. Their claims about the New Hampshire facility, the Spaulding Youth Center, were corroborated by an attorney for the federally funded Disabilities Rights Center in that state, who found that Sara was repeatedly restrained by staff in the facility between 2008 and 2010.
According to Aaron Ginsberg, the DRC attorney, Sara was often restrained at the Spaulding Youth Center while naked or partially clothed for hours at a time, and male staff were often involved. She frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion, Ginsberg stated in an internal DRC memo. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg wrote.
Sara Duzan (fourth from left) celebrates a birthday for her grandmother with her family. Pictured are (from left) Erin Hachey, Sara’s sister; Maryann, her mother; Virginia Herrity, her grandmother; Sara; David, her brother; Paul, her father; and Tyler, her nephew. The family has not seen Sara since June and is currently not permitted even to communicate with her by phone.
Ginsberg further noted in the memo, dated November 8, 2010, that Sara’s behavioral outbursts appeared to be largely in response to physical restraints or the threat of their use from the staff at Spaulding. In his memo, Ginsberg stated: “In most incidents, Sara would not become aggressive until staff approached her or became physical with her.” Her family believes her aggressiveness in those situations was an attempt to protect herself.
A full investigation of Ginsberg’s findings was apparently never done by the DRC, however. Now, the family is concerned staff in Sara’s current residence run by Becket Family of Services are once again using excessive restraints on her.
The use of restraints to control behavior has become increasingly controversial. In an online paper written for the Minnesota Governor’s Council on Developmental Disabilities, attorney David Ferleger maintained that there “is a proven risk of death and other injuries” from the use of restraints, and that “programmatic and planned restraint is not therapeutic or educational.” He noted that prone restraints involve “the prone positioning of a patient, following which their wrists are secured behind their back, their ankles are tied, and their wrists and ankles are subsequently secured together by pulling the shoulders back and bending the legs towards them.” In a series of 214 cases of people subjected to prone restraints while in agitated delirium, death occurred in nearly 12 percent of the cases, Ferleger stated. Ferleger contended that only vertical person-to-person restraints should be allowed, and only for “a very limited time.”
Excessive restraints as well as communication and visitation restrictions could violate Massachusetts state regulations that require that people with intellectual disabilities receive humane and adequate care and treatment as well as the “least restrictive” level of care, and that they have the right to be visited. There may be violations as well of regulations governing the use of restraints.
For the Duzan family, all communication with Sara was cut off on November 26, two days before Thanksgiving, when Maryann received an email from attorney Lynn Turner, Sara’s current guardian, announcing that all further contact either by phone or in person was being “suspended indefinitely” and that the police would be called if anyone from the family or “an agent of the family” attempted “to come onto the program,” meaning the Becket Family of Services residence. Turner stated that this cutoff in contact was being instituted “as per agreement between the program staff and me.”
A few months earlier, a document provided to the Duzan family from Sara’s current residential program stated that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her. All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end. Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
Maryann contends the family was allowed seven phone calls with Sara since the end of July, and during five of these phone calls, Sara made statements about being assaulted, punched, restrained and living in poor conditions. In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.
Similar restrictions on family contact were imposed while Sara was at the Spaulding facility. The latest restrictions on family contact were put into effect despite the fact that a probate court judge in 2010 described the family’s “undeniable love” for Sara. The family’s apparent problem, as characterized by Norfolk County Probate Judge George Phelan, was that the family as a whole was uncooperative with providers and appointed guardians, and felt “only they know what’s best for Sara.” Phelan termed the family “ill-suited” for guardianship and “inartful.”
Colleen Lutkevich, COFAR Executive Director, maintains that the Duzan case illustrates the danger a family can face in caring for a disabled loved one if they lose guardianship of the person. Not only has the Duzan family lost all contact with their daughter, but they say they have spent their life savings on legal costs in their so-far unsuccessful effort to regain their guardianship. Their legal battle has been a byzantine one that has involved a succession of guardians and even a Special Master in July who is supposed to resolve disputes between the family and Sara’s current guardian. During this time, the state has paid at least three attorneys to fight the family efforts to regain guardianship, Maryann said.
Andrea Barnes, the Special Master, wrote in July to Maryann that she agreed that “it is important for Sara to know that contact with her family will be a normal part of her life…” But it does not appear that Barnes has acted on the family’s behalf to restore that family contact. Maryann wrote to Barnes on November 24 to ask her to get Sara out of the current residence because she thought she was being harmed there, but Barnes responded the next day that she had no reason to believe Sara was being harmed. Barnes promised only that she would visit the residence to check on Sara “sometime in the next few weeks, and will certainly let you know if I have concerns.”
Maryann Duzan and other family members initially gave up their guardianship of Sara in the wake of a December 2009 investigation by the Massachusetts Disabled Persons Protection Commission (DPPC) into allegations of abuse of Sara against the Duzans themselves, including an admitted instance in which Maryann slapped Sara on the cheek. Maryann contends Sara was browbeaten by the Spaulding staff to implicate her family in abuse.
Maryann said she slapped Sara on one occasion because Sara was acting aggressively while at home and was threatening to throw a radio at her. She said Sara was acting out because she was due to be returned to Spaulding the next day following a weekend visit home. Maryann said Sara did not want to go back to the New Hampshire facility because she was being physically abused there, but did not communicate that verbally to her family at the time.
The eventual DPPC report noted that aside from the slap by Maryann, the allegations of beatings of Sara by one or more members of the family were all the result of a statement given on one occasion by Sara to staff at Spaulding. The report concluded that the DPPC could not substantiate the allegations of abuse other than the slap by Maryann, and that Sara had never spoken negatively of any of her family members until the single occasion on Sept. 1, 2009.
While the abuse allegations against the family were under investigation, Maryann and her husband, Paul, agreed on the advice of their then attorney to temporarily relinquish their guardianship of Sara. The DPPC then filed numerous motions for co-guardianship arrangements in probate court that would limit the family’s involvement with their daughter. In October 2010, Judge Phelan ruled that none of the family members were suitable to be either guardians or co-guardians, and that Daniel Smith, the executive director of the Arc of Greater Fall River, should be Sara’s sole guardian. Phelan noted in his ruling that Smith had served as guardian for 24 other persons.
The major concern Phelan raised in his ruling regarding the family was not any alleged abuse by Maryann or other family members, but the difficulty that provider staff, guardians, attorneys and others allegedly had in dealing with the family as a whole. But despite the judge’s criticism of the family for acting as if they knew best about Sara’s treatment, the federal Developmental Disabilities Assistance and Bill of Rights Act states that families shall be the “primary decision-makers” in the care of their loved ones with developmental disabilities.
Meanwhile, in September 2009, allegations of excessive restraints used by Spaulding were reported by the Duzans to the Massachusetts DPPC. Maryann contends the family has tried for four years to report abuse and neglect of their daughter to the state. She says she sent graphic photos of injuries of Sara while at Spaulding to the DPPC’s deputy general counsel.
But, unlike the attorney for the New Hampshire DRC, no one from the Massachusetts DPPC investigated the family’s claims of abuse at Spaulding, Maryann and other family members maintain. “They (the DPPC) have made it clear they simply don’t care (about the alleged abuse of Sara by Spaulding staff),” Maryann’s son David, who was temporarily a co-guardian of Sara, stated in a detailed timeline that he wrote about Sara’s treatment from 2006 through 2010.
In June 2011, the Duzans’ new attorney, Michael Turner, alleged the use of excessive restraints on Sara at the Kolbourne School in New Marlborough, MA, where Sara was sent after Spaulding. Turner’s motion alleged that Smith did nothing about either the alleged abuse at Kolbourne or the previous alleged abuse at Spaulding, and that Smith cut off the family’s contact with Sara while she was at Kolbourne. Turner then proposed his wife, Lynne, as Sara’s new guardian. The family wanted other “options” for guardianship examined, but that apparently never happened.
In December 2011, Smith stepped down as Sara’s guardian and the Duzans agreed on Turner’s advice to accept Lynne Turner as Sara’s sole guardian and to sign a stipulation in probate court that they would never sue the DPPC, DDS, Smith, or their previous state-appointed attorney, George Marlette. They further agreed to sign a stipulation that no family member would even apply for guardianship of Sara for five years. Maryann said the family felt forced into signing the agreement to hold the parties harmless out of a fear that the family would never see Sara again otherwise. To avoid the appearance of a conflict of interest, Michael Turner stepped down at that point as the family’s attorney.
Today, the family considers Lynn Turner to be acting contrary to their and Sara’s best interests because she has upheld the Becket program’s restrictions on their communication with Sara. Once again, the family is unable to contact Sara, despite the assessment by a probate judge that they are a loving family to her. And once again, they fear Sara is being subjected to abusive restraints.
“All we want is Sara safely back home, never to be hurt again, and state agencies to stop retaliating against our family,” Maryann says.
We share the Duzans’ concerns about the situation Sara may be facing in her current residence. We hope the probate court will act quickly to return her to her home. We urge people to call their legislators to ask for their help in getting Sara back home. And we think this case merits an independent legislative investigation of all of its aspects.
The phone numbers for the Legislature’s Children, Families, and Persons with Disabilities Committee are (617) 722-1572 (Senate staff), and (617) 722-2011 (House staff). You can email the co-chairs of the Committee: Senator Michael Barrett at Mike.Barrett@masenate.gov and Representative Kay Khan at Kay.Khan@mahouse.gov.
In addition, you can contact: Governor Patrick constituent services at constituent.services@state.ma.us; DDS Commissioner Elin Howe at elin.howe@state.ma.us; and Attorney General Martha Coakley at ago@state.ma.us.
A ‘thank you’ from Patrick Costa
A funeral mass was held November 26 for Patrick Costa, a longtime resident of the Fernald Developmental Center, who died on November 19 at the age of 49. Below is a letter written in Patrick’s voice by his guardian, Ann Witham, who read it at the mass for Patrick. Ann is a former Fernald employee who agreed to be Patrick’s guardian after his mother died. She also managed the Fernald chapel for the Rev. Bill Leonard, who has been the pastor at St. Jude Parish in Waltham in addition to his Fernald Chaplin duties.
My Dear Family and Friends,
During my time on earth, I could not talk; I never learned how to read or write or spell; or how to type or use a computer. But my life has changed. I’m with God now and as long as He’s ok with it, I can do almost anything, including writing this thank you letter.
The first thing I want to say is a big thank you to all the folks at Fernald for caring for me for almost forty years. They gave me the best they could and I am truly grateful for their efforts. It was not easy for me to leave that home, but in the end, it turned out to be a very good thing for me. When the time came for me to move here to the Wrentham Developmental Center, you went to a lot of trouble to make sure that Heffron “B” was really ready for my friends and me. You even took extra time to fix the few little things that somehow got overlooked the first time around.
Patrick Costa
My friends and I were warmly welcomed into our new home. It seemed as though everyone involved in our care – from direct care staff to clinicians and everyone in between, took the time to get to know each of us as individuals and to learn first-hand what each of us liked and disliked. You saw abilities and possibilities, not just disabilities; potential, not just limitations.
You found out that I liked to walk and made sure that I got to join a walking program and participate in Special Olympics where I won a medal. How proud and happy that made me feel! I really liked that special green suit I wore for the occasion and showing off the medal to my friends. I enjoyed going to the pool and you made sure that I had enough swimming trunks for these outings. I am so grateful for your supporting me in all my athletic endeavors, and for finding alternative activities when exercise was no longer possible for me.
Thank you for taking the time to make sure I ate my meals slowly so I would not choke. Sometimes it was a real challenge just to be sure I chewed before I swallowed, or, to make sure I did not snitch something from another’s plate. I must admit though, I did manage to succeed a couple of times and thoroughly enjoyed it.
You learned to read the visual ways and sounds I used to tell you what I wanted or what was wrong. Somehow, you knew that when there was a lot of commotion in the apartment, I would need to “get away from it all;” and spend some quiet time in my room. You even made sure that I had a special chair to use for relaxation.
Going to Adult Ed was a favorite activity for me. I was thrilled when I could sign a card with assistance. When I could no longer get to the program, you made it happen right in my apartment. That’s what the world would call “really great customer service.”
Van trips were also very special to me. I especially liked going to the restaurants that went the extra mile and texturized our food so we could eat our meals there. Thank you for taking the time to plan and organize those special “nights on the town.”
To all who stayed with me while I was in the hospital and at The May Center and back at my apartment, I owe so much. Your presence gave me more comfort than I can tell. It was wonderful to wake up and see a familiar face there with me and to hear your voices reassuring me that all was well. You knew the severity of my condition, but never let it discourage you from being upbeat with me. Special thanks go to Keith, my long-time friend and companion. During the last days of my life, Keith watched out for me, protecting me from “strangers” he did not know, keeping things where he thought they should be and making sure staff was always paying attention to me. A special thank you to new friends from Steward Hospice. Their care, compassion and concern for me as a person went far beyond what I expected. Even Keith could not prevent their welcomed presence in my life during my final days.
Mark, I know distance and family matters made it very difficult for you and Beth to travel to visit. I know you were in constant contact throughout the years, and that the distance did not separate me from your thoughts and affection. I tried so hard to wait for you, but Jesus came to bring me to my forever home and I had to go with him. Please take care of yourself. Your wife and your children need you.
I owe a very special debt of gratitude to Jim Devin for bringing Ann, and sometimes Marilyn, to visit with me. Jim and Ann, I knew you were both there shortly before I died, and I felt your love and took it with me when Jesus came to bring me home. And, last but not least, thank you to Father Bill for coming here on his day off to lead you all in prayer. Father Bill, I’m going to ask God to bless your ministry and to let you have calm seas, fair skies and a string of “keepers” for all the coming fishing seasons.
My friends, I hope you do not grieve too long for me. My spirit lives on and is oh so happy now with Jesus and my mother and all my friends and relatives who went before me. I will never forget you and will always pray for you. I pray God will wipe the tears from your eyes and hearts and that his peace will console, bless and always be with each of you.
With much love and gratitude,
Patrick
COFAR blog 