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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 from November 2011 until January 2013.  In her current residence run by Becket Family of Services, she appears to be living in a room with only a box-spring and some personal items.  She destroyed much of the other furnishings in what her mother believes have been repeated attempts to escape.

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.

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  1. Amanda Downey
    December 23, 2013 at 4:31 pm

    Is Sara in prison or an assisted living home? Is Sara a criminal or a disabled woman who has been robbed of any and all control over her own life. Is Sara being punished simply because she does not have the capacity to handle this situation any differently? No presents for Christmas from her family? This is utterly ridiculous. And that her court-appointed guardian has yet to visit Sara concerns me. Sara is not a case file. She is not just a number. She is a human being with feelings and love to give. Does separating her from a family that loves her and wants to have a relationship with her do anything productive? Really? Who is trying to save face here?

  2. Tamra Eisenhardt
    December 23, 2013 at 5:24 pm

    I am an SMS parent as well. My daughter has destroyed or damaged furniture, walls, fuxtures and many more household items. This is the behavior of a SMS individual. They can not help their reactions when they are in a rage. They are simply wired this way. They absolutely should not be punished or restrained for their outbursts! Doing so only makes this situation worse and exasperates the the behavior! Furniture and personal items gets destroyed and replaced with more durable furniture and new personal items. They do not get striped away from the individual! Of course we take precautions in what we buy or leave in reach such as glass or sharp items but you learn these things when raising an SMS individual. I would NEVER recommend placing an individual in someone’s care without having the parent or whomever raised the child give their input on what has helped or harmed that child in the years raising him or her! These behaviors of a SMS individual must be follwed and observed in a “ABC Format”(Antecedent, behavior, conlusion). The antecedent is the critical factor in this observation. The antecedent tells us caregivers what happened before the behavior began. We use this information to then redirect, or stop the behavior from happening again. Never is the conclusion to strip the individual of their rights, wants or needs. My SMS daughter uses this ABC format on a daily basis. In doing so we have learned that our (parents) behaviors or reactions to situations have caused most of our daughters behaviors. So in conclusion we (parents, caregivers) are the ones who need to change our responses or behaviors to help the SMS individual. It would be in Sara’s best interest to follow this format and have her caregivers learn and change their responses to help Sara. Never should a caregiver restrain a individual having these types of behaviors. Restraining is looked at as “the old, barbaric” way of dealing with “meltdowns”. Time has proven that the restraining technique has not been successful in any way! It only hinders and hurts the individual. This must be a team effort involving the SMS individual, behaviorist, and the caregiver to help the SMS indivdual thrive!
    When reading this post, the first statment that I found absolutely absurd was that Turner ( the now gardian of Sara) has not visited Sara since July! How can a court appointed gaurdian be allowed to go 4 months without seeing who they are supposed to be caring for! This a huge failure of the justice/court system! Furthermore, Sara went from a facility that engaged her in using her natural caring and loving abilities to help the community to a facility that is not using any of her abilities to help her be a productive member of society!
    My conclusion to this is it must come down to money that is to be used for Sara. In my opinion the Duzan’s would be the best option to place Saras care and trust in. They have raised her and know how to handle this young ladies behaviors. I think in their care Sara will flourish and thrive! I believe the placement that Sara is in now is throwing Sara into regression. Having limited or no use of her abilites is certainly hindering Sara. Having a Guardian that hasn’t seen her in 4 months is absolutely not helping her! Sara needs out of this facility NOW! The facility she is in now seems to be taking the money they are supplied for Sara’s needs and taking away her needs! How can this be justified in the court system? Our SMS individuals require more than the “average” or “typical” person. This syndrome is so complex on many levels including behaviors, central nervous system, physical well being, speech progressions, sensory disfunction disorder. All of these must be monitored and worked on in a daily basis.

  3. Nancy Grant
    December 24, 2013 at 2:05 am

    I am a mom of a 15 yr old SMS boy & Ben would be confused, terrified, emotional & behavioral if we just stopped seeing him… we are his life & without a family around to show love, help & understanding these kids have nothing.
    How would you feel if you were just cut off from your family without any contact?? — Thinking maybe they don’t love you or want you when the truth is they just want you back so bad they fight daily & you don’t know it! This facility & workers have no right to put Sarah through such terror — I would believe that this isolation would be causing Sarah to have more behaviors (& severe ones at that) because of the lack of family & friends contact – our children are people with disabilities not criminals… her mom, Maryann & family WANT her & need her back today!
    Think about if this was your family, your child, sister, friend… what they are doing to Sarah is criminal & against the Law!!! We are not allowed to give any forms of discipline to our children but these people can hurt & torture Sarah both physically & mentally & the gov’t is backing them & paying them to do so… this case worker should have a review of her position too… how the hell does she know Sarah is doing ok if she never goes to see her & just takes the word of these workers who are harming her!!!
    LET SARAH GO HOME PLEASE!
    ps Our syndrome is very misunderstood & most professionals are even ignorant to the symptoms & characteristics as it is rare – most parents are the experts because we have had to learn every aspect to teach others who treat our children!
    Good luck to Sarah & her family ❤

  4. Orzechowski Ed
    December 27, 2013 at 10:48 pm

    This case reads like an international hostage-taking. A woman is held incommunicado, her family is expected to rely on the word of her captors that she is being treated well, and is forced to pay exorbitant sums to an unaccountable legal system that sets its own rates—payments not for their daughter’s release, but for some foggy maintenance of the status quo. With no rights to communicate in any way—not even a Christmas present—Sara Duzan’s seclusion might as well be in some Cold War gulag.

    Custody battles are ugly matters, often degenerating like this one into “he said/she said” statements from opposite sides. While I certainly have no way to measure the love of the Duzan family or the care of the Becket Family of Services, I can’t believe that the current situation is the best for all parties, in particular for Sara Duzan.

    Terms like “guardian ad litem,” “Special Master,” “baseline behavioral data,” and “telephone protocol” are legal and clinical gobbledygook, devoid of human association. A woman is being prohibited from all contact with her family. Period. How is this just?

  5. December 28, 2013 at 6:48 am

    As the parent of a child with SMS, I would really love to hear the other side of this story, so that I can learn how to avoid the unfortunate situation that the Duzans have found themselves in. I understand that Sara wasn’t able to have any communications with her family over Christmas. This feels heartless to me. Is there any justice for this girl? I need to understand the reasoning of this on the side of the authorities? What exactly did the Duzans and Sara do wrong here to be separated so completely? My daughter’s world is her family, as I understand are all SMSer’s Their emotional maturity stays at that of a child, and what child wants to be away from their parents? Why are we separating a loving family and a mother who wants her daughter back so desperately? Why are we charging this family for this torture? What guarantees are there in the system that this won’t happen to me too? How can I keep from losing my own daughter, who I need help with from authorities to care for because I cannot afford to hire private care? Do I need to bow out and hide? Do this on my own? Fly under the radar? This scares the life out of me and there seems to be no accountability from the other side.

  6. Anonymous
    December 29, 2013 at 2:28 am

    We are parents of three boys, one of them is a nine year old with Smith Magenis Syndrome.
    Three things are true about Smith Magenis Syndrome: The kids/adults have a genetic drive for adult attention and a positive schedule of praise and reinforcement goes a long way to maintaining positive behavior; their emotional development is most significantly delayed causing an asynchrony that is difficult to understand/plan for; and consequence based strategies for inapporpriate behavior are not successful and in certain cases escalate tantrum behaviors.
    Physical touch (god forbid holding or restraint) does not calm as it does some people, it escalates the self harm, property destruction or whatever else might ocuur during a tantrum.
    When he, or many SMSer are in tanrtum mode, it is a fight or flight adrenaline response that
    they are not choosing at that point. They need caregivers who are emotionally connected, able to keep calm, so that the child can borrow the calm to regulate and move on. The family are the best caregivers, they know the child/adult the best and are not confined by expections of a system/beaurocracy not individualized for a person with Smith Magenis Syndrome. It is an unbelieveable travesty that the State of Massachusetts has not yet corrected what must be a terrible series of unfortunate events at best and a human rights violation at worst. Either way, post haste, Sara must be returned to her loving family so she can heal and move on. Melissa Haley and Tim Mulrooney

  7. Evelyn Popper
    December 29, 2013 at 9:09 pm

    Have the Duzans been told specifically what they have to do to be deemed suitable guardians for their daughter? Is there a timeline by which they can prove their suitableness, or does this scenario go on forever, with no end point?

    Is there a Federal agency that supervises/funds/regulates statewide programs for developmentally delayed adults? Is it Medicaire? Massachusetts has been so unresponsive to the damaging situation Sara has been kept in. Perhaps higher authorities could help.

  8. Anonymous
    December 30, 2013 at 12:12 am

    What does the area’s Human Rights officer say and or that committee which is supposed to review the use of restraints and the program’s that go with them. Has her service coordinator been visiting her. The ” Guardian ” is not fulfilling their duties to the court and should be replaced. That person not only should be seeing her but be involved in the meetings about her programming. Why can’t she have supervised visits, with rules set up prior to the event? I doubt we’re getting the full story.
    BGN

  9. Laurie Bellet
    January 7, 2014 at 7:12 pm

    As the parent of an adult daughter with SMS, I am outraged at the treatment being imposed on this young woman and her family. It does not sound like Sara is being appropriately medicated nor is she being allowed to function in the least restrictive environment possible. It is unclear why Sara and her family are being subjected to this harrowing life experience. Everything stated here about Sara’s current living situation goes counter to contemporary practices and insights into the lives of adults with SMS. Has the media been made aware of this situation?

  10. Father to son with SMS
    January 8, 2014 at 8:04 pm

    What is going on here? This is insane. Is it 2014 or 1014? The facility and the state and the court are treating this young woman and her family as though we are indeed in medieval times. As a rational adult, I do understand there are probably more than just 2 sides to this story. But really, as many commenters here have noted, when it comes to SMS, there is really only one side that matters: That of the family that raised Sara.

    Unless someone can point me to evidence that Sara has been abused at home, this needs to end. (It needs to end regardless, and her housing and care must change.) So many phrases in this piece angered me… “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…”

    Gee, really? An SMSer was “shy and hanging on to a friend and not communicative with police?” Well, blow me down. Pro-Tip: That’s what SMSers do you idiots. Intellectually disabled, emotionally stunted individuals with a genetic wiring no one can possibly understand unless you are a parent or sibling of an SMSer absolutely cannot be jailed as Sara has been.

    My son is nearly 8. I can’t imagine what he would do after half a day with nothing at his disposal and no loved ones near. And he’s not really destructive. I am 100% confident though that in a similar situation, after just a short while – say, 6 waking hours – he would bloody and possibly break his own nose, he may concuss himself, he would destroy all that he could destroy in his room, he may detach a retina and what the heck, he’s surely scream himself hoarse. And my son is on the better end of the SMS behavioral spectrum. WE, his parents, manage his behaviors with the wonderful help of his school and a paraprofessional we employ. This tight team are the ONLY people on earth that have achieved what successes our son has had and the ONLY people on earth who properly know how to deal with his particular brand of SMS outburst.

    A bunch of joker jackasses at some court appointed facility are destroying this young woman. I don’t care what she did to wind up there. They are killing her. 22 years of hard work to manage Sara have now gone to shit with this lunacy.

    Sara is surely very difficult to deal with. And only getting more difficult by the day. Any transition for her at this point will be traumatic and will result in violence and destruction. That’s SMS. Again, I don’t know the whole story here, but I’m eager to learn all sides of it.

    Sorry for the ramble, but I’m seeing red.

    sgw

  11. Beverly
    January 9, 2014 at 1:12 am

    I am the parent of a young man who also has SMS. I too am horrified by the imprisonment and inhumane treatment of Sara. She is a young woman with a disability; she is NOT a criminal! She needs loving care and guidance–not restraints and abuse. Who is accountable for this situation? How can these people sleep at night knowing that they are responsible for the reprehensible treatment of Sara? The longer Sara is held hostage, the worse her behaviors will become; I can’t even begin to imagine the damage this is doing to her physically and emotionally. Where are the responses from her so-called “guardian” and care providers?? Who can step in and free Sara from this torture?

  12. April Norrell
    January 10, 2014 at 3:59 pm

    What has Sara done to deserve this? Nothing. She is completely at the mercy of her caregivers. She has no voice. She cannot make decisions for herself or her life. I am praying that Sara is returned home and very soon. Sara is not being treated fairly. She needs to be at home with her family. Only they know what is best for her and her life.

  13. Debbie Hixon
    January 17, 2014 at 9:37 am

    Simple, people with SMS do NOT do well with change no matter how big or little it is.

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