COFAR blog

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.