(Cross-posted from The COFAR Blog)
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 also email the co-chairs of the Committee: Senator Michael Barrett at Mike.Barrett@masenate.gov and Representative Kay Khan at Kay.Khan@mahouse.gov.