(Cross-posted from The COFAR Blog)
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.”
