(Cross-posted from The 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.
Respectfully, I find this to be an inappropriate forum to discuss the needs and care of Ms. Duzan. Her care and the confidentiality of that care is governed by a variety of privacy laws including HIPPA; and other privacy concerns.
Though I agree with dcjayhawk that the patient’s privacy, and the restrictive nature of HIPPARCHUS, make this a difficult venue for discussion, still we really must scrutinize the care of disturbed people, incarcerated people, and others who can be too easily ill-treated or defrauded because they are outside the daily view of the community. MA has a special (though not unique) duty here because parts of its mental health system were for years a notorious horror.
What’s needed is a broad view extending beyond the individual patient. But this isn’t a forum for long-form journalism, either. Perhaps Dave-from-hvad will follow up with updates, and perhaps include links to background stories and broad remedies that might be helpful to those who can take a moment to better inform themselves, without burdening readers who are already up to speed on the issue or detracting from the necessary work of putting a human face on policy.
Oops
How so?
If we were discussing, say, working conditions in coal mines, then a mine operator here could say, “You guys have it all wrong. Here’s the way things really work.” Or, they might say, “You have a point, but here’s why we have to do things this way.” And we could weigh the arguments.
HIPPA really prevents caregivers from explaining much, or indeed from responding. That makes it hard to discuss matters like Duzan here. Still, it’s important to think about policy in human terms, not merely rules and statistics.
and to be perfectly honest, the privacy part of the rule prohibits any kind of disclosure of health care related information. Any. But I am unsure of what he refers to when he mentions the “baseline behavioral data” report.
When certain people don’t want to answer questions, as is the case here, they play the HIPAA card.
I bet the DDS never thought this would be made public. They like to operate in the shadows.
Keep up the good work, Dave.
It seems for posts like this at least the names should be changed to protect people’s privacy. I’d also love to know your backstory. Your handle indicates you see yourself as a muckraker against DMR and you only comment on the COFAR posts.
are generally up to the family or the guardian to decide. In this case, the family wants the story out because they want their daughter back. They want people to know who she is so that those people are then more likely to help them persuade politicians and other leaders to free their daughter. The court-appointed guardian has not visited Sara in almost five months. We are honoring the family’s wishes in this case.
to the administration and ‘community’. This is not a home. A home doesn’t treat people like that. True professionals don’t conduct themselves like that.
This young woman is being held in isolation under false arrest and her human and civil rights are being violated.
I have been following this story. I never knew much about SMS but have learned quite a bit about it here.
I have to disagree that this is not the forum for this discussion. If not here, where? Who in this cast of characters is going to the raise the issue of this women’s care. Certainly not the caregivers in the home or the company that employs them and certainly not the court appointed guardian who is so disinterested she couldn’t find time to even visit this women in 5 months even with all these allegations floating around.
I think that HIPPA is DDS’ best friend and the disabled worst enemy. Not that I’m in favor of people’s personal information being release to the world, but for DDS and various companys that provide care it is a convenient sheild to hide behind. Just about anything you can think of can somehow be made to fit into the HIPPA category.
But when individuals (many who can’t speak for themselves) are completely dependent on the care provided by others, behind closed doors, how else can the quality of that care be checked if not through observation and questioning of people who would not necessarily have access to someone’s shoe size and blood pressure readings.
Generally when Dave posts for COFAR you are the first to comment, followed closely by truthaboutdmr – it’s so predictable, and usually to say how so right Dave is.:)
The difficulty in this public discussion goes beyond HIPPA. There are checks in place, such as the Court system and the DPPC, the state’s Protection and Advocacy Programs and others that are neutral and professional in their approach. The original posting was issued by the PR agent of a group, COFAR, which is a group with a specific agenda attacking the private provider system. In this forum, the poster is able to make any allegation without substantiation or response knowing that the provider and state are forbidden to respond or explain or give detail by federal and state law. However COFAR uses that silence more often than not to suggest sinister darker motives. Many prefer to turn to the DPPC, or the Courts for an understanding rather than an interest group with a pre-conceived explanation, whether its accurate or not.
It would be helpful I think if you participated more often on these threads for that perspective, even if you must confine yourself to generalities and hypotheticals.
The COFAR spokesperson often presents one side only, I generally respond to his posts when I feel they are particularly egregious. I am a family member of an individual with a disability who formerly lived in an institution; my activism, and professional experiences in this field is are outgrowth of my seeking quality community services for my brother. COFAR speaks for a very small segment of the disability parent community who favor an institutional model that is no longer viewed as affordable, viable or best practice by disability experts and the overwhelming majority of the disability community.
whereas the ADDP, which you head, advocates for state-funded contractors. It’s a clear conflict of interest for the ADDP to comment on a post like this because a state-funded provider is involved in the case. Your members make money off state contracts and we don’t.
…that both of you are sincere in your advocacy and that just maybe some situations work better for some and other situations work better for others?
I’ve raised if you’re going to get involved in this debate.
1. Do you agree or not that the president of a statewide lobbying organization should disclose who he is in his profile on this site?
2. Do you agree or not that it is justifiable in any way to prevent a family from all contact with a loved one for months, and even prevent them from sending her Christmas presents?
3. If you’re concerned about privacy issues, why do you not criticize the Globe for writing about the “abduction” of Justina Pelletier by Children’s Hospital in Boston? She’s named in that story.
You’ve clearly taken a side on this blogsite against COFAR, but I’ve never seen you address the issues involved.
It’s up to the editors to enforce profile disclosures. Maybe it’s a good idea, but I don’t get worked up about it. Maybe if he initiated diaries Iike you do I would see it as more important. I knew who he was and somehow so did you so that seems to be accomplished. BTW, I don’t think it’s wrong to have state-funded contracts nor particularly relevant. Unless you can show the state was bought off I’m inclined to conclude that the state believes they provide the appropriate services for most of this community.
It seems odd to prevent family contact, but my “there must be another side to this” sense gets triggered pretty easily. We only hear one spun side from this, but Blumenthal’s reluctance to engage doesn’t help.
I am not a regular reader of the Globe and have zero knowledge of the story to which you refer.
I’m not necessarily against COFAR (though in exchanges between you and Blumenthal I have concluded that his side generally represents the greatest good for the greatest number), but your posts frankly in a way I can’t put my finger on tend to rub me the wrong way. Maybe it’s not so much the diaries themselves, but the predictability of the response: You post and ssurette and truthaboutdmr who are silent about everything else respond as good yesmen to contribute nothing except to say in so many words, “You’re so right, Dave – what brilliant insight.”
was that turns you off about them, I’d attempt to change it. But that’s exactly what rubs me the wrong way about your comments to my posts. You make vague criticisms without getting into specifics, and then you say you really don’t know enough about the matter to address specific issues. If that’s the case, I don’t understand why you want to comment at all.
We found out dcjayhawk was Gary Blumenthal only by accident. Someone “outed” him on a guess, and he was forced to admit who he was. I don’t see why a distinction should be made between posting and commenting as to whether someone should disclose their identity in their BMG profile. As to predictability, why are you not critical of Mr. Blumenthal, who predictably hates everything I write and always levels the same criticisms?
I’ve never said there’s anything wrong with state-funded contracts. I simply believe that someone who heads an organization of state-funded contractors has a conflict of interest in commenting on issues that affect his membership without disclosing who he is.
You say there must be another side to this story and you’re only getting one side in my post. I think that’s something of a cop-out. First of all, I’ve backed up every claim I’ve made by documents in the case and interviews with the family. I have asked the other side for comment and not gotten a response. This is basically the same process any investigative reporter uses. I take pains to make my writing style as journalistic and free of opinion as possible, aside from an expression of my opinion at the very end. Sure, you can argue that I’m coming at this from one side of the issue, but you can make that same claim about any reporter who writes about a complex matter.
It seems to me that any reasonable person would have to be disturbed by the facts in this case as I’ve laid them out. That it is simply “odd” to you that a family would be prohibited for months from communicating with a loved one is, well, odd to me.
it is you who is the president of a special interest group with a member that has a direct, vested interest in this case. You never disclose that dcjayhawk is the user name for Gary Blumenthal, president of the Association of Developmental Disabilities Providers.
Everything in the post is based on the record in this case. Nothing here is made up. If you know of any inaccuracies in this post, please be specific and point them out.
COFAR, moreover, is a nonprofit organization that advocates on behalf of people with intellectual disabilities and their families. We receive all of our funding from donations from families and other advocacy groups. Unlike the ADDP and its members, we are not funded through state contracts.
…disclosed several times who he is. Knowing who he is is exactly why I invited him to offer his own perspective more regularly.
Otherwise, there is no disclosure. When you click on dcjayhawk’s user name, no information comes up. Unless someone is aware of instances in the past in which dcjahawk has disclosed that he is president of the ADDP, because he has been called out on it, they would never know who he is. If he wants to have credibility on this site, he should disclose in his profile who he is.
not because it has anything to do with the conversation, only because I have been singled out for my comment here and prior comments. I have been taken to task here before for only commenting on posts about this subject. I said then, just like I am stating now, I only comment on this subject because it is the only subject in this forum I feel strongly about.
I do take offense that I am categorized as some sort “yesman” for dave-from-harvard. My comments are my own. When dcjhawk, or you Christopher, say something that I happen to agree with, I will say so.
Actually adnets comment below couldn’t have summed up the situation better. Rather than trying to get to the bottom of what is happening to this women, which is the point of the post, the comments are derrogatory about the history of my comments, truthaboutdmr, dave, etc. etc.
And of course, dcjhawk who is in fact paid to lobby for community care providers by those providers, could not pass up the opportunity to take a shot at institutional care when it has absolutely nothing to do with this women who is living in a community home and being cared for by the providers he lobbys for.
Really quite tired of what experts believe, and national trends, costs, viability, the greater good and on and on. Its irrelevant to the post.
Reality here is that it doesn’t matter if the women is living in an institution or a community home. The fact is there are allegations of abuse and they need to be addressed no matter where she lives. And I believe that is all I said here pointing out that HIPPA rules are the typical response and will make getting to the facts next to impossible.
with ssurette. dcjhawk has tried distraction by making it seem that dave-from-hvad has done something wrong, when he hasn’t. If dcjhawk were the advocate he claims to be, instead of trying to squish this story, he would be advocating for the needs of this young woman, which are clearly not being met by the one-size-fits-all $ervice$ which have been imposed on her.
When I first read this post I thought this can’t be happening in a state where the governor has a civil rights background. This is a result of incompetence at its best on more than one front.
Seems odd to prevent family contact? Sounds like Nazi Germany to me.
Thus it is a bit pointless to try and engage in a prolonged or enlightened discussion. Mr. Kassell is the paid spokesperson for a small group known as COFAR who prefer state institutions to integrated or community care. They tend to view the majority of the disability community as suspect and “in it for the money” if they disagree with Mr. Kassell or COFAR. COFAR cross posts its comments on its own blog as well as BMG and uses BMG, a progressive Democratic blog, to attack the Governor for his Community First program, and to accuse members of ADDP, a non profit organization whose members non profit community organizations, such as Arcs and other provider organizations as being corrupt. It is frustrating battle in which to engage. In the case of Ms. Duzan, I have no information, nor does Mr. Kassell, that represents the entire situation, however COFAR and Mr. Kassell, as their spokesperson, present incomplete information as the whole truth and nothing but the truth.
In matters such as this advocates have fought for protections such as the Protection and Advocacy System, the DPPC, Court Monitors, Guardianship laws and other legal officials. Mr. Kassell and COFAR would have you believe all of these protective elements are wrong, but COFAR is correct. Mr. Kassell and COFAR understand that these protective services and Court authorities are forbidden by federal and state laws from commenting in such a public forum.
Per Mr. Kassell and COFAR, when one disagrees with him and his associates they are merely doing so because of monetary reasons, as if only COFAR and Mr. Kassell, their paid spokesperson, singularly possess objectivity and purity. For these reasons, I choose to not respond to all of Mr. Kassell’s or COFAR’s missives. I only respond when his statements are egregiously misleading or unfair as I thought his original posting appeared to be without the opportunity of the state or Court to respond.
By the way, I assume you are paid by the ADDP.
I don’t hide who I am on this site; however in my life I am more than just my job. My interests and life extend beyond one topic. I regret that you feel the need to respond to people who question you with personal attacks and an eternal questioning of the motives of others.
There are some who would disagree with that. So, let me make a suggestion to you. Simply insert the following statement into your currently empty BMG profile: “I am Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers.”
It’s a grand total of 13 words. Not everyone knows who you are when you post your comments about issues that concern your organization. As a matter of fact, I would guess very few people know who you are. If you follow my suggestion, people will at least be able to click on your user name and find out who you are. It’s what I’ve done with respect to COFAR. Are you willing to do that?
I prefer to not reinforce your cyber bullying. When I registered years ago on BMG I filled out the info as requested like other people who post. The dcjayhawk is part of my email address which I have had for over 20 years reflective of my time in Washington working in the Clinton Administration as the executive director of the President’s Committee on Mental Retardation; and my time in Kansas as a legislator working primarily on disability issues. Besides what else could you complain about without personally attacking me for what you perceive to be ulterior financial motives? Thanks but not thanks, I decline to be cyber bullied by you. You might want to chill a little David and get in the holiday spirit and think of people who disagree with you as merely people who disagree with you, not people of ill intent with improper financial motives. Your propensity to be so harsh with people who disagree with you is why (with the apparent exception of today) I prefer to ignore your attacks and only respond when you are egregiously inappropriate. Back to the young woman’s case at hand, I still believe this forum is not the right place to have a fair discussion. The Courts, DPPC, and the P&A seem more likely to be objective, rather than you or me, which has been my point all along despite your personal and inappropriate attacks.
Well, that helps to explain how the disability system got so messed up!
that advocates for all people with intellectual and developmental disabilities. We are affiliated with the Advocacy Network and the national VOR.
We support community-based care for those who can benefit from it and institutional care for those who want and need it. That position is consistent with the ADA and other federal and state laws and regulations, and is consistent with the 1999 Olmstead Supreme Court decision. We do not engage in personal attacks against anyone, and certainly do not engage in “cyber bullying.”
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?
I am the parent of a young girl with Smith-Magenis Syndrome and while I don’t claim to know the details of this case beyond what is written in this post, I think this is terrible. As a parent of a special needs child who will one day need services like Sara (because I will not live forever), this leaves me wondering what exactly could have happened here so that Sara has been treated like a prisoner and kept away from a family that loves and wants her back. I don’t know, because, in the name of “privacy” I am not told.
While you all are arguing about whether this is the right place to discuss this issue and hiding behind legal precedents and regulations, a young woman was not allowed to be with her family at Christmas. Sara may have intellectual disabilities and she may not be able to express herself in a manner that everyone can understand, but she does have feelings. She does know what makes her happy. And she certainly could tell anyone who bothered to ask how she would like to live. Because at the end of the day, this is the important question:
What is best for Sara?
Is liberty and freedom of choice reserved only for those that can afford high powered lawyers or can express themselves eloquently?
The fact that her state appointed guardian barely knows Sara and is depending on reports from the home that Sara is residing in makes me wonder if the best decisions are being made for her. While being a caregiver is a difficult job and they have my upmost respect for the work they do everyday, these reports are going to likely be one-sided and written from the view of people that may not understand the complicated issues that those with Smith-Magenis Syndrome deal with. Because it is a very complicated and confusing syndrome, even for those of us that live with it everyday.
Our SMSers are deeply dependent on their loved ones. Being away from them will exacerbate their volatile behaviours and make it difficult for them to control their emotions.
I hope that the people who are involved in this case will revisit this and find a way to make sure Sara is in the best situation possible with access to the ones that she loves.
Let me first address the HIPPA issue. In my own opinion the HIPPA law mostly works for doctors/staff to cover their liability. Quick testomy, my husband was admitted in the hospital not conscious of his surroundings or where he was and the doctors had him sign papers to cover a procedure they (doctors) seen fit for him. The problem with this was he signed, went into the procedure, came out and “came to” and was appalled at what had happened! I, in the mean time, was not allowed or suggest what I thought was best for him nor were the doctors allowed to tell me what was going on with him all because of this HIPPA law! Here’s the kicker, he came in for a neurological issue, cardiologist got ahold of his insurance and decided he needed a full heart examination. He had a Loop Recorder placed under his skin and one month later he had it taken out because NOTHING was wrong with his heart!!! The hospital and doctors just made a bunch of money off his insurance during his unconscious state!
Now for the Duzan case. I am an SMS parent to a 9 year old girl. My daughter has the same behavioral issues as Sara and most of the SMS individuals! These behaviors are a characteristic of this syndrome. This past June I met with Sara and Maryanne along with Sara’s dad. They were a wonderful family! Sara’s parents were very attentive to her needs and wants. Sara is more of a “high functioning” SMS individual. She speaks well, states her opinion on circumstances, and let’s you know when she is not happy. Sara is in love with her family! I talk to her often via Facebook and she is very excited she has a new nephew but unfortunately can not see him. Sara is used to being out with her friend, getting pedicures and manicures and eyebrows waxed. Before this “hostage” took place, Sara was a helpful, productive member in her community.
Please imagine getting in a car with your friend, going to get your hair and nails done. Seeing family and the babies in your family that you love and adore and even help raise. Then the next day police show up at your door and put you in solitary confinement. You can’t even go outside for fresh air. You get “hog tied” because you try to get out and you get beaten over and over again! You have no idea why you are there or what you have done wrong to be there because NOBODY will tell you why. You try to get answers from your family in that 15 minutes you have to make a phone call once a week but your family ( the ones you trust the most and hold your life in) can no longer speak to you and then one day, that one little 15 min. A week life line gets cut off! So now, here you are, stuck in this little room with nothing but a mattress, few personal items and no communication to anyone that can help you! Would your behaviors cease….yes! You have to cooperate with your captures! Would you behave if you were let out of your room to get a meal…..yes! It’s your only chance to see other captives and get that sniff of fresh air! It’s your only way to know if the other captives are getting beaten the same as you are or are you the only captive in some sick twisted game? Did your family on the “outside” give up on you?
If you were in the military signed up for infintry and you were held captive you could somewhat understand. You signed up for this and there is that little chance it could happen to you. If you were a missionary and were held captive in a third world country you would know why. There was that chance it could happen!
Not the case with Sara! She is held captive because he was born with SMS. She is held captive because she’s not a “typical” human being! Does this not sound like Nazi Germany? Doesn’t this sound like a criminal that was incarcerated for a crime he didn’t commit? It does!!! You thought this could not happen in our country, in this day of age. Well it does, it is and it has been! Free Sara now you control loving, sick twisted human beings! And for the staff who have beaten Sara because she is disabled and doesn’t react how a “typical” person should….hope your not walking alone at night down a dark alley!