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.
COFAR blog 
If there is nothing hide, the famiiy should be welcomed wiith open arms into this young lady’s life. How many children are in foster care & returned to horrendous family situations with the main intent not the children’s welfare but reunification with the family? This hardly seems comparable to that type of situation. A lot to hid & $ involved would see to hit people in the face as the reason. The rights of this young lady & her family have been ignored & removed. For shame !!
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This is a slanted one sided view.
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How is it slanted? Can you provide some specifics about anything in the post that is incorrect? Are you involved in the case?
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I also agree this is a slanted one sided view. I feel if the post or petition are going to beg to the readers , let it be the truth !!!!! I strongly disagree that the phone calls were ended for NO apparent reason !!!!
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Yes, please elaborate on your statement.
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If there is another side, why don’t you share it?
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This poor young woman was born with a disability and now these backward agencies are taking away the one thing that brings happiness to her life….her family. They should all be ashamed.
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My daughter and Sara have been friends for almost 2 years. They have spent long hours chatting on the phone and on Facebook . They share the same diagnosis that of smith Magenis syndrome. We love Sara like family and are very distressed regarding her present living situation. Sara is not happy…she is miserable and this can exacerbate traits and behaviors associated with smith Magenis syndrome and this causes me to worry very much. Sara deserves to be happy to grow in her abilities and to contribute to society. I was given the opportunity to chat on Facebook with Sara yesterday morning. She was not the same vital and smart girl I have grown to love. This past year has taken a toll on her. My prayer is that she can be returned to her loving family and begin the process of healing. What she has gone through is inexcusable ! My name is Barbara Mcclenahan and I will testify and stand by this family.
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What is happening to Sara is an outrage. What has happened to Sara over the years is an outrage. She is being treated like an animal. Her civil rights are being violated. She is being abused on every level. The family works tirelessly to get Sara home under their care yet they run into walls at every turn. Why does the state allow this abuse to go on? Why is there no investigation? I have a child with Smith-Magenis Syndrome (SMS). Children and adults with SMS are among the most misunderstood people regarding their behavior. Providers need specialized training on how to most effectively work with individuals with SMS. With Sara, like with all who have SMS, there is no mistaking their beautiful hearts, their loving and trusting demeanor, and above all, the need to be with their family of origin. Sara needs to have guardianship returned to her mother and father. Sara needs to be released from the abusive DDS setting she is in before the damage is irreversible. Shame on the state system for failing Sara.
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You are spot on Leah, if you don’t have a SMS child, you just don’t GET it. Our children are terribly misunderstood, and providers do need specialized training, my heart is breaking for this girl. It is a disgrace, what has happened to her, hard to comprehend. I would like to know from anonymous how this is slanted, and if he/she has a SMS child? Infuriates me. Sara needs to be released, and be back with her family. As a mom of a Smith Magenis boy, it’s a horrific reality that the system can fail our children this misrabaly, instead of providing the care an support our children are needing, and the nurturing the families are all needing. It’s so easy to point a finger if you’re not in the same boat. Our smith Magenis children are a gift but in the same breath are emotionally draining, it’s hard to be on call 24 hours, parents need lots of support, and nurturing, time to recharge. Here is a obvious caring loving family, fighting for there daughter, why hasn’t she been released yet?
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My daughter also has Smith-Magenis Syndrome. She can have explosive and prolonged tantrums. Restraints only serve to drive her even more out of control. It is a confusing syndrome when it comes to their behaviour, but these people are loving and kind and tenderhearted when they are not emotionally overwhelmed. The very idea that any of these people would be denied contact with their family is devastating. I am holding my daughter just a little closer right now… terrified that this could one day happen to us. This entire situation is unthinkable. Intellectually impaired or not, Sara should have some say in her situation. Something must be done for this family.
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I have a 19 year old daughter with Smith Magenis Syndrome; I KNOW the specialised knowledge it takes to care for people with this misunderstood, challenging syndrome. It is not the way being shown by Sara’s current care providers. Sara needs to be in the care of her family where she can be nurtured and grow and not in a setting where the opposite is happening. I will stand by this family from many miles away in their fight to get their daughter where she belongs.
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I am the single parent of a 26-year-old man diagnosed with the rare genetic disorder Smith-Magenis Syndrome, which means I have spent the past 26 years in the full-time occupation of learning about SMS and how best to manage it.
I have never met Maryann Duzan or her daughter Sara.
SMS is an extremely complicated disorder, not well known by medical or other professionals because of its rarity (approximately 600 cases known world wide). Many of the traits exhibited by those with SMS are unusual, and appropriate responses to these individuals are often counter-intuitive to those in the general public. Examples:
**SMSers create the chemicals that cause sleepiness in the middle of the day rather than in the middle of the night. Their sleep deprivation levels effect their behaviors, and caregivers need to be aware of the person’s sleep patterns;
**SMSers are often at an emotional developmental level far below their cognitive and age levels, behaving like toddlers although they are adults;
**Excitment of any kind, whether happy or upsetting, in an SMSer’s environment can cause meltdowns, so calmness on the part of caregivers is essential for an SMser’s well being.
There are many, many other examples of idiosyncratic aspects of the SMS diagnosis, but the families who live with and raise people with this diagnosis truly often are THE EXPERTS about this syndrome and how to work with it.
One aspect of SMS that it universally true, worldwide, is that if caregivers become loud, upset, argumentative, hostile, or punitive, or approach the person physically and come in too close or try to or restrain the person physically, it is 100% sure to provoke or worsen the SMSer’s level of upsetedness. This is known by every sensitive caregiver who has worked with people with SMS. It is necessary to devise a strategy to keep the person safe, and then LEAVE THEM ALONE TO CALM THEMSELVES DOWN.
If Sara is being restrained–and my lord, the description of the prone restraints sound like hog-tieing, brutal and inhuman–then I guarantee you, as will any other person familiar with SMS, that the intervention is exacerbating the problem 100-fold.
I do not understand from a legal point of view how anyone has the right to tell Sara, an adult, what she can and cannot talk about on a telephone call. If she wants to talk about her living conditions or caregivers, how does anyone have the right to tell her she may not? Do not people with developmental disabilities also live in our democracy?
If the Duzans have been evaluated as a loving family, why is Sara not being returned to them? Let Sara go home, and then evaluate how she does. End this scenario, which has to be torturous for all and especially harmful for Sara, the person the “system” is allegedly protecting. What is the state of Massachusetts getting out of this?
This sounds like a Kafka nightmare. Do the right thing, Massachusetts, stop preventing Sara from being in the caring arms of her family.
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1. DDS is hiding stuff.
2. In Massachusetts disabled people have no rights.
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I have known the Duzan family for more than 10 years since I live across the street. The family loves Sarah very much and should have the right to have normal contacts with her, including regular visits. Sara needs to be in close contacts with them and the fact that this is denied to her is an infringement of her human rights. Unfortunately there is no one to defend her. The family has tried all the possible legal ways to protect her. I hope that this will blog will be a catalyst for some actions from those in government who have the power to remedy this absurd and totally unjust situation.
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I live in the UK. My daughter is 4 years old and share this diagnosis. This articles disgusts and terrifies me. I pray that the family are reunited soon. You are in my thoughts x
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These agencies should be ashamed of themselves. This is an absolute outrage. Sara needs to be in close contact with her family. Where she is loved and where she can thrive. I myself have a son with special needs and it scares me to death that this actually happens. The Duzan family needs everyone to help them in this cruel fight and help Sarah get where she belongs and that is HOME!!!!!!!!!
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I have known the Duzan family for quite some time. Maryann and I met at a support group session for parents who have children with various mental health and developmental disabilities. The Duzan’s have been nothing but loving and caring parents to Sara and advocate endlessly to bring Sara home where she belongs. Shame on DDS!! I work with families who are DDS clients and they are the most difficult agency in the state. They never return phone calls, the caseworkers have too many cases and therefore only are in touch with the “squeaky wheels”.
Does these people feel that advocating for their children make it difficult to work with parents?? The Duzan’s love Sara.
I want to end by saying that there are so many 51A reports filed by providers,schools, family, neighbors etc. that get screened out that are far worse than one slap to the face. As a friend and as a mother to a child with significant mental illness I beg you to let Sara come home. Unless you have parented a child with severe special needs, you will never know the journey we have had and will continue to have with our kids.
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For those not understanding how Smith Magenis Syndrome impacts a child’s life, please go to PRISMS.org and read more about SMS. My son has SMS and lost an eye at the age of 8 due to horrific self-inflicted head banging. The behaviors our children display are genetically wired and beyond the child’s control. The treatment being inflicted upon Sara only escalates the behaviors–meaning she is in the WORST possible environment on all levels. Her family adores Sara and was forced to sign away their rights to her and has been fighting to regain custody for far too long. This is not only a “disability” issue but a human rights issue as well. NO ONE should be treated as Sara has been. I am sick for the entire family and especially for Sara. There are others with SMS who have been wrongly imprisoned because of ignorance to the facts of SMS. We will NOT let this continue!!! Sara MUST go HOME where she is loved and where she belongs.
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This absolutely disgusts me. I am a special educator for people ages 5-22 and many if these students suffer from severe behavioral episodes due to placing hands on to protect him/ her. I strongly believe in ABA but what this program is implementing on Sara goes against everything the DPPC and our human rights stand for. Her voice isn’t being heard. Isn’t this what we try and teach our students/ children as they grow up- stand up for yourself . We all have human rights and Sara’s is being jeopardized. I really hope that this family is able to get her home safe and something is done to this facility.
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The FEAR that some facilities instill in some families for talking out against abusive and unhealthy conditions is real. Many Families fear retaliation against their Loved ones if they report any of the problems and abuse they may see or hear about.
This Family is being treated unjustly by these agency’s , the courts of their State and by that they are being abused and mistreated by their own State. Sara has the right to be represented by someone who Loves her and has HER Best interest in mind and heart.
This is not a make believe story. This is not something that doesn’t go on in almost every state. It is a Travesty of Epic proportions. We as Families of Loved ones with intellectual and physical challenges need to rise up as one family. We need to no longer separate ourselves by a diagnosis. We need to become one voice and push for justice and compassion and Fair and Ethical treatment of our Loved ones. We have to remove the road blocks put up to prevent us from having all the knowledge we need to protect our dear family members. We need to fight for their rights. The Dunzan family and Sara have Suffered enough, all families who have suffered at the hand of those who we are forced to put our trust in have suffered enough.
Sara is being treated like a captive. Her Human rights are being violated every day she is kept from her family. The last time I looked we live in the United States of America. A country where we have fought for our Freedom and still do to this day. Why then, in this Great Country can the torture of a young woman with an intellectual disability be tolerated? Sara wants her Mom and Dad and wants to see her Family. Even a Dead beat dad can get supervised visitation. The court should appoint an unbiased person or agency to facilitate supervised visitation and report to the court its findings. I believe the court will see that Sara belongs Home with Her Mon and Dad and the people who Love her. Not held Captive at the hands of people who’s only interest in this entire matter is their own paycheck.
God Bless Sara and her Family. May they soon have Peace in their hearts and their lives and be reunited as a Family once again.
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I know the Duzan family very well and grew up with Erin. They are a very loving, caring and compassionate family and would never put any of their family in an unsafe situation. This whole matter is just another case of the state and government sticking their nose where they don’t belong. There are families out there in very nasty and poor situations/living conditions and even when police are involved no one does a thing about it. There was a time when children, no matter what their lives entailed, could be disciplined t certain guidelines and we turned out fine. The problem with kids today is there is no discipline and that’s why they run around out of control with no respect for anyone or thing. Please help this family get their daughter,sister,granddaughter back into the arms of the people who love her with all they have and have done everything necessary to raise this young woman to the best of their abilities plus some. A child with or without mental disabilities will always test the patience of those who love them and raise them, but just because of an alleged minor lapse in judgement, which for all anyone knows may have been necessary at the time, if it did happen, is no reason to take the child from everything they know especially if it is putting them in even worse conditions that could easily set back the mental achievements obtained after 22 years. have met and seen Sara with her family and she was always happy and smiling and enjoying the life that he had. My thoughts and prayers to the friends and family of the Duzan’s. Good luck t you all, much love.
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My daughter has Smith Magenis Syndrome as well. My daughter has the behavioral issues that are involved with this syndrome. These behaviours are not easy to handle and should be observed, evaluated, and addressed by a professional who specializes in these types of behaviours (i.e.behaviourists). Then the parents/caregivers can be well equiped to handle the Child/adult dispaying these explosive behaviors. As parents we learn or are taught how to properly handle our SMS children. These are not the typical behaviors that a “typical” child/adult displays. At State level to county and city level many of our SMS children are being violated. Their rights has human beings are taken away! The police are not educated enough to handle our children. The group homes are not educated enough to handle our children. The police, staff at group homes need to have instruction on how to properly treat SMS kids/adults along with Autistic citizens ( SMS closely resembles Autism). What is our country to do with Autism on the rise and there is not instruction on how to handle these citizens during a legal matter? This is becoming an epidemic! It must be addressed. How can the police do a proper investigation on a legal matter that they have not been instructed or educated on?
On a personal level, I had the opportunity to meet Sara and her parents at a SMS gathering this past June. Sara displayed some amazing abilities! She was attentive, mobile, engaged and inquisitive. She was happy. Her mother Maryann was very attentive of Sara’s needs. They are a loving and happy family together. In this past week I have spoke with Sara via Facebook. I asked “are you excited for Christmas”? Her answer was “No”. She was very excited to tell me she has a new nephew. Sadly in the placement she is in right now she is not able to see him! Sara loves babies and to interact with them but again because of this situation her abilities that have been gained or learned are not being used. She is a human being trapped in walls of a building with little to no communication to the people she enjoys the most! Sara should be out and contributing to society that she is highly capable of.
Ask Sara, what she wants! She is an adult being treated as an adult! Sara was unfortunate to have been born with this rare and complicated syndrome. Why does she have to “pay” anymore?
I stand behind Maryann and especially Sara and I will testify for Sara to help her have a life that she deserves!
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What the heck is going on out there? Such ignorance is shocking. Besides educating the public what can be done? Poor Sara. Her life and her family’s life must be hell right now.
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I am Kathleen Despres, Maryann’s first cousin and good friend for many years to Paul Duzan. She is merely a paycheck for over $22000.00 per month for state employees. Paul and Maryann are the most loving, caring patient parents I’ve ever encountered in my life. They raised three beautiful children. Erin, the oldest, is a nurse in a well known hospital;
David has college degrees and continues to work with father, Paul in their roofing business;
When Sara was diagnosed with Smith McGinness syndrome as a child, her family (direct family, cousins, grandparents, aunts and uncles) understood that Sara was speciial and nocontinue to love and understand. I’ve never seen a famly with so much patience and love as the Dizans. Sara should be home with her familily so that her parents may be able to find a day program to help with everyday skills;. I’ve seen all of her family fight the State for 4 years now and it’s enouogh! Please, I’m just Aunt Kathy and I miss her like crazy/ You can be sure Gov Duval that Sara will not be restrained, beatend and isolated if she omes home. She will experience the love and patience and that’s the way it ought to be. Please let’s not haave a media circus buit if that’s what it takes, I’m on board.
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I am truly saddened to continue to read about these pathetic situations where people who have been put in positions to safe guard and protect those who cannot protect themselves abuse that privilege and responsibility. From the get go the states representatives appear to have been either dropping the ball or not interested enough in their responsibilities to do proper assessments of the reality of the situation. My question is how can it be possible that the family the Duzans can be denied access to a family member Sarah when that family has done an outstanding and loving job taking care of this young lady up until the state got involved. I have read the report I have seen the testimonials offered here and I AM SORRY THIS HAS GOTTEN WAY OUT OF HAND. This sounds like a gestapo state…where is the governor, Mr Patrick on this? Mr Patrick this is certainly not something I would like associated with my watch or while you’re in charge. How long will Sarah be denied her loving family, particularly now during the holidays. Duval put your ear to the rail and see if you can hear that freight train of a ground swell heading your way . Even you cannot deny this is inhumane. Let’s get together and take care of this situation before it goes any further! Chris Hammer
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I am the parent of a young woman with SMS that unfortunately also found herself in a similar situation like Sara. The worst thing for Sara is to have her contact with her family denied. It took a bit for those involved with our daughter to realize that her behaviors escalated when she was denied contact with us. It sounds as if Sara is experiencing that same stress. I have spoken to sara on the phone when she was home – and she was a very verbal happy young lady – I can’t imagine how frightened she is – her whole world has been turned upside down. She has a loving family that wants the best for her and to hear all of them are denied contact with Sara is beyond my comprehension.
Our children struggle with communication skills and when they are stressed their only way of showing their frustration is by acting out – at objects, others and themselves. Restraints will just make her angrier- my daughter would be restrained and medicated and once it wore off would go back to acting out. At the very least at this point – someone who is familiar with SMS – an independent psychiatrist perhaps should be able to go visit Sara to ensure her safety and proper treatment while this issue of her returning home is resolved. Ultimately Sara needs to be returned to her family- to her home so that the Duzans can give her the life she deserves and all the love of a family she already has but probably doesn’t realize anymore due to her current situation.
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This is so sad and appalling!!!! My granddaughter has Smith Magenis and I can attest to the fact that restraining is not the way to go with these kids. Even when they have had to hold her at the Dr.’s office or hospital, she goes wild. She hates to be restrained at any time. She is also very attached to family. They need their famil in their lives, especially their mom and dad!!!! Please give this beautiful child back to her family where she belongs!!!!
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I have a 25 year old son with SMS. My son has lived in a group home since he has been 8 yrs old and the struggles we’ve been through — this story instantly brought tears…I could not finish.
Sara needs her family immediately!
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As I am sure your readers can understand, this is a complex situation. This blog represents only one perspective, and the writer clearly did not check with me or with other parties involved before presenting this story. I can assure you that we are all very concerned about the best interests of the individual involved, including her privacy.
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Dr. Barnes, Thanks for responding to this post. I left a phone message with you last week and emailed you yesterday. I hope you will give your perspective on the case, if, as you say, this blog post represents only one perspective. As the subsequent post notes, I’ve asked you a number of questions, including whether you support the cut-off in communication with the family and whether you are confident Sara is not being subjected to excessive restraints in her current residence. Also, can you let us know why you have not agreed to share Sara’s treatment records at the Becket facility with the family? Finally, why is there no written agreement or invoices regarding your charges to the family for your services as Special Master?
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I apologize, but I accidentally left this off my previous post:
5). How is the lack of communication from her family being explained to Sara? What is she being told about it?
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Thank you Dr.Andrea Barnes, this individual’s very complex. I also agree this story or plea’s a one sided story. This individual’s well taken care of , and is provided for in a positive manner. She only reacts to conversations on the phone that are negative and are geared in an interrogative way, I will not mention names of members previously posted on this blog. This individual has come a long way since residing at Becket Family of Services. The staff at Becket are professional, caring and understanding towards the needs of this individual. The Team’s also caring and professional in every aspect of this individuals care.
Becket looks forward on serving this individual and will move forward to maximize this individuals capabilities to her fullest ability. I thank you again Dr. Barnes.
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The only ‘side’ to this blog is the TRUTH of what has & is happening to Sara. There are enough posts here from non-family whom have had contact with Sara prior to & while at BFS, to prove that the treatment that Sara is getting falls well BELOW what would be considered as “well taken care of”. Sara’s rights have been violated as well as Sara herself.
Sara reacts to what Sara wishes to react to, as with ALL individuals with SMS. Sara’s communications with Family was only ceased when Sara complained about how she was being treated & what was being done to her that frightened her. The TRUTH HURTS! And in this situation, the TRUTH is HURTING Sara!
This ‘Facility’ needs to be THOROUGHLY investigated & NOT by appointment so staff has the ability to tidy up & make themselves look respectable!
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I look forward to reading answers to Mr. Kassel’s question Dr. Barnes…we support Sara and her family reunification…
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Barb…. I think we all are waiting on this ‘Dr. Barnes’ to reply. I think she must know that we, SMS parents, won’t ‘hear’ her rhetoric & therefore has absolutely nothing to post on this blog.
I am wondering if you have been allowed to speak to Sara since posting here? Has your contact with Sara been cut off too??
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I too look forward to reading Dr. Barnes responses. As I understand it the writer of the blog has checked with the Sara’s family before publishing and has documentation for all he has written. I find it disturbing that Dr. Barnes indicates concern for Sara’s best interests yet does not indicate that she has looked into any of the allegations, nor does she refute them. I also understand that the appointed guardian has not visited the house prior to placement nor since placement. It is also a fact that per approval by the legal guardian Sara was home with her family for 13 months from November 2011 – January 2013 with absolutely no problems. During that time no services provided for Sara. Again, I too look forward to reading Dr. Barnes responses.
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I, too, am anxious to hear Dr. Barnes’ responses to the information presented in these articles, as I would also like to hear more from the anonymous respondent who wrote on December 9th that this blog is presenting a “slanted, one-sided view.”
Making broad-brush, non-specific statements challenging the integrity of the information presented, without offering opposing data to support their claims, does nothing to educate readers about “this complex situation,” and does nothing to prove that this blog “represents only one perspective.”
Please, Doctor Barnes and December 9th respondent, present your points of view. We sincerely want to hear them.
Dr. Barnes, your note says you “are very concerned about the best interests of the individual involved,” and of course, you realize that we are all also very concerned about Sara’s wellness. To that end, when you reply and provide whatever additional information you feel will elucidate the situation, can you please let us know the answers to these specific questions:
1). Is Sara currently, or has Sara in the past, been physically restrained in her current residential setting?
2). Is Sara forbidden to speak with her family on the telephone, forbidden to initiate a telephone call to her family? If so, please explain how you consider this to be “in the best interests of the individual involved”? If your opinion is that severing communication with her family is necessary, can you please explain how cutting off communication immediately before Thanksgiving and during the Christmas season is in Sara’s best interest.
3). Are Sara’s communications via computer (on Facebook, for example) being censored, edited, controlled or monitored by any one other than Sara herself? Is she allowed to express her thoughts freely, as she chooses?
4). How would you describe Sara’s current mood, her affect?
Thank you for taking the time to respond to us.
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Evelyn… those are all excellent questions that I think are very relevant to Sara’s well being. Even if Dr. Barnes isn’t willing to share those answers with us to “protect” Sara’s privacy, I hope she’s taking them into consideration when it comes to Sara’s care. Just because Sara has some disabilities, does not mean she doesn’t know what would make her happiest.
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Ditto!
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Sara is not only a friend to me she is my Best Friend & Sister. From the 1st time i meet her i knew we had such an understanding for each other not becuase we were different beause we were so much alike. I can remeber & decribe the who sence of us meeting & so many memorys that i cherish! Sara has been more a part of my being & upbringing than many would ever reilize. I look up to Sara in so many ways as she faces each day, with terrmendice stregth. I am so worried that those days have been taken from her, now to way in fear & isolation. How can they do this to her, Why would they hurt her? These are a few ? I wake to ask myself each day. A i have not seen her in way to long. She was the 1 person i could every call a Friend & the 1st Friend i wanted to be my son’s Aunt. We went through school together & as i was her protector always & she was who i wanted to be, with her personality, smile & strength i looked to her in guidence as many would might wounder at how i could, Sara to me the the Best person in my life growing up. I know if i had a bad day i would always rush in my house from the bus to wait & hope for her call, to “Wanna come ovah ViVi” & i still find myslef looking over her number or resiting her house number as it was the one i knew before i rembered my own. As we seperated into different school, i hit life changes that i wish i could of prevented & every way, terrors happened to me & Sara was still there but i was not. I had changed & my mind had ran a million miles away to hide. But through it all Sara was the one who called everyday to check on me & i would give anything to have picked up that phone. Years went by & her & her loving family let me right back in as nothing had changed & i am forever greatful to each one of them. Sara is the most amazing person i know! A true gift to me & everyone she touched & once you have met Sara she had touched your heart forever. I cant pass by one place we have spent time together & not think of her laugh, her smile & the way she would joke 🙂 Sara’s family is so much of what a amazing young woman she is they have raised her to be the best Sara she can every be, never trying to change her, simply letting her grow into her self. I see the Duzan’s as my family, They have have always been there for me as they have Sara we had an amazing childhood together.
Not only do i think that Sara should be home in her family’s arms. These places that have harmed her need to be prosicuted against to the fullest! I want her Home, but they need to understand what this family has gone through, not as a case number or a stamped file. They need to read between the lines & let Sara have a voice!!! If you have gotten to know Sara as well i have been blessed with you will know she is so inteligent & beautiful & aware. I do forsee them knowing the last part witch scares these authoritys & by god damit they should! The pain they have caused her physical & emotional, i would not be able to take, i know this is true becuase i have seen it 1st hand. What makes me lay wake at night is what i dont see or hear & the countless sleepless nights i can only take myself back to the nights we would stay up all night talking of the world, sharing our dreams & hopes for the furture & this i know that this hell she is living with Not a part of that!
If you have ever gotten to see or speak with Sara or share a Laugh you kno she is One Of A Kind & i know as her Best Friend i Cherrish it all!
It took me several tries to read through this article, even though i know each heart wrenching detail.. A half hour to stop crying,to be able to see the keys/get myself to type that first word…Know i am over & hour into this blog & beileive me when i say i could continue to share each memory with each one of you witch i truly would love to…
The sole fact that Sara as been cut off with communitcation to her Family & Friends is beyond belive of any person, how do you wrap your head around this world wind of cover ups & pain to be unplugged when Sara begins to speak of how her day realy was, not what they want to “pretened” it was.
This has been such a long road for Sara through all the different placements that they have thrown her in unwillingly. She has been beaten, abused, physicaly & emotionaly but she will not let them break her.
SARA is REAL & she is in Danger if we dont STAND UP & give Sara her voice back once again!!!
Please Be a part & Help BRING Sara HOME!!!
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Thank you my Beautiful Vanessa,as you know I consider you my third daughter and a very special person.Sara had lots of hospitalizations,lots of therapies to be able to walk,talk and swallow without choking.We had no diagnosis,knew there was something wrong and spent countless hours at Doctor appointments and endless hours awake EVERY night.
Sara started our early intervention school at 10 months old and went into regular school at 5 years old.Shortly after entering the main stream public school,teachers started telling me there was this little girl,named Vanessa who when all the other children would leave the sand box and run to the swings,Sara would not seem to notice that she had been left behind.But this little girl Vanessa would notice and stay behind,have Sara get up and hussle her after the other children,like a mother duck gathering one of her chicks.
I will never forget the first time I met you,it was at the school Halloween party,you jumped out at me,your whole bubbley,smiling wonderful self.You acted as if you knew me and said I’m Vanessa can I take Sara down the hall and get her nails painted.
From that day on Sara had the best friend God could have provided her with.You see they were inseparable,Sara through Vanessa learned to bike ride,roller blade(#41),ice skate,they even were taught to scuba dive.Vanessa was a regular at our house after school,they did homework together ate dinner and weekend sleepovers.
Many,many nights you could hear Vanessa from Sara’s room,with the SMS sleepless nights.”Better go to sleep now Sara,I’m getting mad” Vanessa always treated Sara like she was just a typical person,but also knew just how to manage her behaviors not that she would have many with Vi. I know Sara just wants to be treated like every one else and this is what Vanessa did for her.
Over the years we have brought Vi on very long road trips,summers by the Sea even SMS events,she became a very big help to me as Sara gained independence,and she could be off with her freind who would watch over her and protect her if need be.They had the typical on and off relationship through their teen years, but never severed their bond.Sara would be relentless calling ViVi on the phone,as she would be trying to grow with her typical peers.But Vanessa would take every call Sara put into her and always find time in between,to do something together with Sara.
Our family is very close with this young woman,you can see why I think of her as my third daughter,during the past four years as Sara has been put in and taken out of our families life.Vanessa has remained in our life,we were able to have her live with us,so she could finish High School and then upon the birth of her beautiful son Sheamus,Vanessa needed a place to live,to figure out her next steps forward.They stayed with us for 6 months,she saw the heart ache our family went through,even though she knew.You see Sara was home full time for well over a year when no agency,guardian or program scrutinized what went on under our roof or what Sara could “talk about”.Sara helped her freind Vanessa with the care of baby Sheamus,who is now 21/2.Time goes by so quickly.
I guess with Vanessa’s testimony of her love of her “Special” freind,and the fact that time goes by too quickly.Sara has missed four years of her life,Sara has been relentlessly abused,I can name well over a dozen “proffesionals”as they call themselves,that have seen and know of the abuse Sara has suffered and still does.Sara is a daughter,grandaughter,
sister,sister in law,auntie,cousin and freind to many.All of her above titles have been removed,Sara has been disengaged with her former life.Not allowed to speak,visit or even receive presents from all of those who Love her.
Sara now remains captive in a house,not allowed to use a phone should she want to call for help,Sara has had 7 phone calls to our family in 5 months where she has spoken of abuse assault and unfit living conditions.Phone calls have been ended with the pulling of a plug after Sara confides in us what is happening to her.Now communication is terminated
INDEFINATELY.How can anyone CONDONE the treatment Sara endures and how can anyone CONDONE taking Sara’s life away.
Yes “this is a very complex situation” Yes Sara’s freinds and family “are all very concerned” about her well being and living conditions.Sara has not only been “Shut out of contact” with her family.She has been shut out of contact with anyone she knows.We are not concerned “with our privacy” we want it all out on the table.We have nothing to hide,The State Agencies,
Sara’s State Atty.and Guardians have all been signed off,we were told back in December 2011,we would never see Sara again unless we held them all Harmless and signed their agreement.We signed off for the Love of Sara,and she was returned to us for 13 months,not realizing they would get their Hooks into her again.
Maybe someone should speak to Sara,she knows what is happening and she knows what she wants.However it would open a can of worms,so she must be silenced,and some might be concerned with” her privacy”.
As I wrote in an email to my State Representative this week.–We have met our demons over the past four years.But you have to know and particularly because we have Sara,we have met way more Angels along our road,than devil’s.Life can be good and people wonderful,we look forward to the return of our daughter Sara and the process of healing.
Thank you for your tender words Vanessa.You are one of the Angel’s I speak of,I am so grateful of the friendship you share with Sara.I know you’ll always be there for her and I will be there for you.Love ya xxx
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Evelyn Popper, those are very good questions. I too am waiting to read the responses that Dr.Barnes has to offer. Sorry to be so frank but I am quite frustrated with the fact that the Christmas season is now upon us and what I see are some professionals that perhaps have “left” this matter alone until after the holidays. I find it very disappointing that perhaps this case is just sitting around just like Sara and her family are doing until the professionals in this matter get their family time together around the holidays out of the way. I know this is just speculation but I have not seen a response from Dr.Barnes, the governor or any other person who could help this family or at the least give a response to the the questions that were asked.
The one question I keep coming back to is has ANYONE asked Sara what she wants? Sara is an adult and can speak for herself. She needs an unbiased trustworthy person who can ask her if she wants to stay at the facility or go home!
Governor Patrick, when are you going to allow an unbiased party to step in and make some conclusions in this matter?
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I am a mother of 4 & our youngest is our SMSer… he will soon be 15. Everyone has expressed my feelings throughout but I do want to say our children have a hard time communicating as it is & if Sarah has the ability to express happiness, sadness, fear or of being mistreated she should be allowed to tell someone. I am one who feels there must be something these workers are hiding – if she were happy & well cared for they would not have a problem with Sarah communicating with anyone!!
There is no love & understanding like that found in a family… our son is severe & I could not imagine anyone having the patience & support that we give him. Using any type of restraint on Ben makes it 100% worse – we know how to help our children because we are the ones who have grown & had to learn the tricks of the trade to make our days the best & as behavior free as we can.
Please, as a mom of an SMSer, please let Sarah go home, she will be in the best care & her family will be sure no one can harm or abuse their baby … if you have never lived our lives you really & truly do not understand.
All my support & prayers to this beautiful family.
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<blo
:
This is a slanted one sided view.
represents only one perspective, and the writer clearly did not check with me or with other parties involved before presenting this story. I can assure you that we are all very concerned about the best interests of the individual involved, including her privacy.
I see Sara has not benn home for Christmas or New Years? What are you waiting for? I have been around Sara and her family’s many times before she was not allowed “HOME”. I am aware of Sara,s condition and see that she had a loving and caring family. They handle her condition fine. i
It is difficult for any family to deal with conditions like Sara,s. Sara,s abusive treatment must stop and everybody should find a way to make it possible for her to have her loving family back.
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There ‘is’ an apparent reason….Sara told her Family the truth about the treatment she was receiving & phone calls were ceased…that’s the ‘reason’. BFS is harming Sara & she knows it. They are doing all they can to stifle her ability to tell the truth about the placement she is in, plain & simple!
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For all we know she’s being molested at that facility and no one can do anything about it because, well… the parents are out of the picture.
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