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The governor’s FY ’15 budget for DDS is out of balance
Governor Deval Patrick has proposed a whopping $162 million increase in funding for residential care provided by corporate providers to the Department of Developmental Services in the coming fiscal year.
The proposed 19 percent increase in funding is intended to raise rates paid to the providers as stipulated in a provider-backed law passed in 2008. If the Legislature accepts the governor’s proposal, it would bring the DDS corporate provider line item to over $1 billion, which would represent a 64 percent increase in funding since FY 2007, adjusted for inflation, according to the Massachusetts Budget and Policy Center’s online budget analyzer.
The proposed $162 million increase for FY 15 matches the increase Massachusetts provider-based advocacy organizations have requested for the provider residential line item.
The problem is that the governor’s FY 15 budget continues an unbalanced approach to the care of people with developmental disabilities. It would provide a huge increase in funding to a network of corporate contractors to DDS with a bureaucracy of highly paid executives, while continuing to bleed other DDS state and community-based accounts.
As has been the case in recent years, the administration has not been as generous in proposing funding for state-operated programs and state employees working in the DDS system and even for some other community-based programs. State-operated group homes have been the destination of many of the residents of developmental centers that the administration has closed in recent years, and the governor’s proposed FY 15 proposal for state-operated residences would represent a 44 percent increase in funding since FY 2007. While welcome, that increase would still be 20 percent less than the provider-run group home increase over the same period of time.
Funding for developmental centers, meanwhile, has plummeted by 47 percent in inflation-adjusted numbers since FY 2007. While the Monson and Glavin developmental centers have been closed and most of the residents of two other centers have been moved elsewhere, the residential population of the Wrentham Developmental Center has been increased to over 300. Yet, Governor Patrick has proposed a further $13.4 million cut in the developmental center line item for the coming year, amounting to 12.7 percent cut in FY 15 dollars.
In testimony prepared for today’s hearing by the Joint Ways and Means Committee on the FY 15 budget, the Massachusetts Nurses Association calls for adequate funding for the developmental centers and a more balanced approach to DDS funding in general. “We believe that rather than investing such a large sum of money into privatized services (the governor’s proposed $162 million increase in the provider residential line item), where a significant portion will go to pay for administrative services rather than direct care services, these funds could better serve Massachusetts residents if invested in these line items and state-operated, community-based services,” Michael D’Intinosanto, RN, president of MNA’s Unit 7, states in his written testimony.
Proposed funding for service coordinators, who are DDS employees, has barely kept pace with inflation. Service coordinators, who are responsible for ensuring that DDS clients throughout the system are receiving services to which they are entitled, have seen their caseloads rise dramatically in recent years. In real terms, funding for the DDS administrative line item, which includes the service coordinators , would still be 22 percent lower than it was in Fiscal Year 2007 if the governor’s FY 15 budget is approved.
In his FY 15 budget proposal, Governor Patrick has proposed a $1.8 million increase in the DDS administrative and service coordinator line item, which is less than a 1 percent increase from current-year funding in FY 15 dollars, according to the Massachusetts Budget and Policy Center’s budget analyzer.
Other DDS accounts for community-based services have also not fared as well as the provider-run residential account. The governor has proposed virtually no increase for next year in the $5.6 million line item for the DDS Autism Division, which amounts to a cut of 1.8 percent in FY 2015 dollars. The providers are asking for an additional $3 million in this account, or more than a 50 percent increase. They contend there are more than 400 people with autism on a waiting list for services.
Also facing a cut in real terms in the coming fiscal year in the governor’s proposed budget is the Turning 22 program, which funds services for individuals who have graduated from the special education system. The providers have asked for a $15.2 million increase in the Turning 22 account, which would more than double the current-year funding of $6.5 million. Funding for Turning 22 will have been cut by 35 percent since FY 2007 in FY 15 dollars, if the governor’s budget proposal is adopted.
The short and long-term funding trends for other DDS line items include the following:
- Transportation: The governor proposed a $2.8 million increase in this line item for FY 15, which represents a 20 percent increase in funding over the current year. That total funding of $15.9 million would still be 4 percent less than what was budgeted for this line item in FY 2007, in FY 15 dollars.
- Family and Respite Services: The governor’s budget proposal would only increase funding for family support and respite services by less than 3 percent in inflation-adjusted numbers.
- Community Day and Work: The governor proposed a $17.3 million increase in this line item, or 8.5 percent in real terms for next year. The line item will have been increased by about 30 percent in FY 15 dollars since FY 2007.
The providers appear to be asking for $5.5 million on top of the governor’s proposed $17.3 million increase in the Community Day and Work line item, which would boost the inflation-adjusted increase in the account by about 12 percent. The providers maintain that the additional funding will be needed to provide work opportunities for developmentally disabled persons in the wake of the state’s unfortunate decision to shut down sheltered workshops throughout the commonwealth. The providers maintain the governor has proposed only half the money needed to convert the sheltered workshop programs to mainstream work opportunities.
We hope the Legislature finally takes some steps to restore some balance to the DDS system. It’s time to rethink the relentless privatization of state-run services and an anti-congregate care ideology that is reducing the availability and quality of services to many of our most vulnerable citizens.
Guardian and Special Master point to each other regarding the release of Sara Duzan’s clinical records
A court-appointed guardian for Sara Duzan and a psychologist appointed to oversee the guardianship have both declined to release clinical records about Sara’s care to her family, with each saying it is the other’s responsibility to provide them.
The family has been seeking the records to verify a claim made by the guardian, Lynne Turner, that Sara has “has been progressing very well” in recent months in a group residence operated by Becket Family of Services, a corporate provider funded by the state Department of Developmental Services. Turner has forbidden the family from communicating with Sara since November and from visiting her since last July, when she was first placed in the Westminster residence by Turner.
Members of the Duzan family say they are concerned that Sara has been subjected to abusive physical restraints and seclusion at the Becket residence, but that they have had no way of knowing what Sara’s care and living conditions really are.
Both Turner and Andrea Barnes, a clinical psychologist, who was appointed in July 2013 as a Special Master in the probate court case, have each contended in emails and letters in recent weeks that it is the other’s responsibility to provide Sara’s clinical records to the family.
Sara, now 22, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from both an admission by Sara’s mother, Maryann, that she once slapped her daughter on the cheek, and the conclusion of a probate judge in 2010 that the family had been uncooperative with providers in caring for her. Maryann said she slapped Sara on the cheek on one occasion in 2009 while Sara was acting aggressively towards her.

Sara Duzan with her father, Paul, on an outing a couple of years ago in western Massachusetts. The family is no longer permitted any contact with Sara, and has even been denied access to records of her care in her current DDS-funded residence.
Thomas Frain, an attorney for the Duzan family, initially wrote to Turner on January 10 of this year, requesting Sara’s medical administration records, behavioral plan, records regarding restraints, shift notes and other clinical records concerning her care in the Becket residence. Frain is also the president of COFAR’s Board of Directors.
Turner initially responded to Frain’s request with a letter, dated January 12, in which she stated that she would produce the requested documents if she was first paid $10,000. Her letter stated that her requested payment consisted of $5,000 for producing the records themselves and $5,000 in back payments for her work as guardian.
Turner, who was appointed Sara’s guardian in December 2011, has billed the Duzan family for her guardianship services, but the family has declined to pay her, contending the court order under which Turner was appointed contained no provision for payment of her. The Duzans also contend that Turner has not been acting in Sara’s best interest by keeping her in the Becket residence and by cutting off the family’s communication with her.
Following her letter seeking payment of $10,000, Turner sent Frain a second letter, dated February 2, in which she stated that she did not control Sara’s records or have responsibility for producing them. She stated: “Your concern for Sara should be directed to Dr. Barnes, not me. Dr. Barnes was copied in your letter to me and has the list of documents you requested. She is paid for her work. I am not.”
Frain then wrote to Barnes on February 7, asking her to provide the documents. But in an email in response, dated February 11, Barnes stated she was “not in a position” to provide the records and that it was not her “role” to do so. She also maintained that she was personally “reluctant to supply” the family with the records because the family has been “uncooperative” and has taken an “adversarial and antagonistic position, soliciting support through blogs and public campaigning rather than making any attempt to work with Sara’s providers or with me.”
Barnes added that Turner, as guardian, had the authority to release the records to the family and that she (Barnes) was “not at this time going to overrule the guardian’s decisions about sharing documents.”
I sent an email to both Turner and Barnes on February 21, asking for clarification as to which of them had responsibility for releasing the records and why the publication of blog posts about the family should preclude them from receiving records about their daughter’s care. I noted that the records were “vital in assessing any claims made about the use restraints or other aspects of (Sara’s) care, treatment and living conditions in her residence…”
I also asked in my email to Turner and Barnes whether either of them had yet visited Sara in her residence since she was placed there by Turner in July. I have so far received no reply to my message from either Barnes or Turner.
Turner stated in a guardianship report to the probate court in December that she had not yet visited Sara in the Becket residence. For her part, Barnes stated in a November 25 email to Maryann and Paul Duzan, Sara’s father, that she intended to visit Sara at Becket “sometime in the next few weeks.” The family says they have received no indication that Barnes has done so.
Barnes’ November 25 email was in response to a message from Maryann and Paul, asking for Sara’s immediate discharge from the Becket residence because Sara had indicated in phone conversations to them that she was being subjected to restraints and had been assaulted by a staff member. Barnes responded that she had not received any information “supporting the idea that Sara is being abused.”
In her February 2 letter to Frain, Turner maintained that “Sara is progressing very well and is regularly out and about in the community.” Turner stated that Sara’s behavior had “improved substantially,” and that physical restraints had not been used on Sara in over a month “and maybe longer.”
Turner further implied that Sara’s clinical records would verify her positive claims regarding Sara’s progress in the Becket residence. “Are you disputing the fact that Sara is progressing very well and out in the community?” Turner’s letter to Frain stated. ” If you doubt my word, address this with Dr. Barnes…She has the documentation you seek.”
The only clinical records the family has seen regarding Sara’s care at the Becket facility has been a clinical report, which Turner forwarded to the family in December along with her annual guardianship report to the probate court. That report stated that Sara was continuing to be restrained and placed in seclusion in the Becket residence through the month of November.
In her February 2 letter, Turner also defended her decision to cut off the family’s phone contact with their daughter, stating to Frain that “the acting out behaviors and the restraints you expressed concern about were more frequent when there was inappropriate phone contact with the family.”
Both Turner and Robin Thompson, a clinician at the Becket residence, have maintained that the Duzans violated a telephone protocol established for them, which expressly forbade them from discussing visits home or whether Sara was unhappy at the facility or its treatment of her. Sara was also specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.
Maryann Duzan says that she and other family members were allowed only six calls to Sara between July, when she was placed at the Becket residence, and November, when their communication with her was cut off; and in each call, Sara indicated that she was being subjected to either poor conditions, abusive restraints, or, in two cases, assaults by a staff member.
Maryann says she believes the strict limits placed by Becket on Sara’s ability to communicate contributed to her behavioral outbursts. “Sara has apparently only been allowed to use a phone there six times in eight months,” Maryann says. “She has been denied the ability to report what is happening in her life to her mother and father.” Maryann adds that while she lived at home, Sara would make at least a dozen calls a day to friends and family members. “Sara is very verbal and social,” she says.
Turner also contended in her February 2 letter to Frain that the Duzans had violated the law by recording conversations “with various parties without their consent.” She provided no further details about that charge. Maryann contends that she and her husband tape recorded one phone conversation with Sara in September because Sara had told them she had been assaulted by someone on the Becket staff. Maryann says no one else was recorded in the conversation. She says she turned the tape recording over to the Westminster Police Department after Sara implicated a staff member in the house as having punched her.
The Disability Law Center is seeking to restore family communication and visitation rights with Sara
In January, both the Duzan family and COFAR contacted the Massachusetts Disability Law Center, a federally funded legal advocacy organization, seeking an investigation of Sara’s care at the Becket facility and the circumstances surrounding the cutoff of the family’s communication with her. In response, a DLC attorney began visiting Sara in the Becket residence earlier this month. Maryann Duzan said the DLC attorney is further attempting to restore the family’s right both to communicate with Sara and visit her.
Meanwhile, DDS is in the process of scheduling a meeting regarding Sara’s care plan, known as an Individual Support Plan (or ISP). In her February 11 email to Frain, Barnes said she believed that “some representative of the Duzan family has a right to attend her ISP meeting.”
The July 2013 probate court order appointing Barnes as Special Master stated that the family “should be invited to all meetings where decisions about Sara’s services will be made or discussed.” Maryann says the family, however, was invited only to one such meeting scheduled in early November. She says Barnes cancelled the meeting after Maryann and her husband indicated they wanted to bring their attorney to the meeting. Maryann adds that the family had been informed the purpose of the meeting was to discuss placing further limits on their communication with Sara.
We have written several times about this case because we believe it raises troubling questions about the power of court-appointed guardians and state-funded corporate providers to overrule families in the care of persons with disabilities. In this case, a family that has been described as “loving” by a probate court judge, has been denied all communication with their disabled daughter for months and has even been denied access to clinical records that would give them an indication of their daughter’s level of care and well-being. The family is being kept in the dark about their daughter, and unless an outside agency such as the DLC is successful in intervening, there may be no end to that darkness.
Thus far, it seems to us, the entire system has been stacked against this family. Even the probate court’s attempts to level the playing field do not appear to have worked. Barnes, the Special Master, was given the power to overrule the guardian with respect to “Sara’s medical, therapeutic, residential, day program, social and familial matters,” but she has never done so.
Moreover, in her February 3 email to Turner concerning Frain’s request for the records, Barnes advised Turner to “take whatever is presented by him (Frain) with a grain of salt.” That is an unfortunate statement coming from a Special Master in this case, who was appointed to that position to resolve impasses between the family and Turner. Barnes is supposed to be a neutral party in this case, but her statement that one side in the dispute should regard the other side “with a grain of salt” appears to call her neutrality into question.
“Our crime appears to have been that we advocated too strongly for Sara,” Maryann says. “But ever since Sara has not had a family member as her guardian, nobody has advocated for her.”
To contact the governor’s office about this case:
Contact info for the Governor’s Office: Massachusetts State House Office of the Governor Room 105 Boston, MA 02133 Phone: 617.725.4005 888.870.7770 (in state) Fax: 617.727.9725 TTY: 617.727.3666 Email: constituent.services@state.ma.us
Note: Do not let the people in the governor’s office tell you this is a probate court matter and there’s nothing the governor can do about it. The DDS has long been a party to this case and has fought to limit the Duzans’ rights and involvement with their daughter.
Also, please sign our petition to the governor to bring Sara home on change.org. Thanks!
State-funded provider execs paid more than $80m a year
More than 550 executives working for some 250 state-funded corporate providers of services to people with developmental disabilities in Massachusetts received a total of $80.5 million in annual compensation as of Fiscal Year 2012, based on nonprofit federal tax reports surveyed by COFAR.
The average compensation among all 559 executives surveyed was $143,969 per year. Among CEOs, the average compensation was $185,809, while executive directors were paid an average of $127,164 in salary and benefits.
According to the COFAR survey, provider executives making over $100,000 a year on average included 97 executive directors, 92 CEOs, 71 chief financial officers, 31 chief operating officers, and 83 vice presidents. CEOs or presidents of 14 providers made over $300,000 each.
“I think few people realize what the real cost of privatized care is in Massachusetts,” COFAR President Thomas Frain said. “Do Massachusetts taxpayers really need to be paying hundreds of corporate executives millions of dollars for grossly duplicative duties? This makes no sense at all.”
COFAR has long been critical of efforts by the Patrick administration and the Romney administration before it to outsource residential and other services to providers without adequate oversight of the growing privatized system. The system appears to have become top-heavy with corporate executives who do not provide direct-care services, but who nevertheless draw large salary and benefits packages.
Most of the providers surveyed are under contract to the Department of Developmental Services, which manages or provides services to people with intellectual disabilities who are over the age of 22. Frain noted that DDS pays more than $1 billion a year in contracts to service providers, which operate group homes and provide day programs, transportation and other services to tens of thousands of intellectually disabled persons in the DDS system.
State regulations capped state payments to provider executives at approximately $149,000, as of Fiscal Year 2011. The average compensation among the surveyed executives was slightly less than that amount. Money earned by executives above the state cap is supposed to come from sources other than state funds.
But while the state cap on executive salaries is intended to limit the total amount of state funds going into the pockets of provider executives, COFAR has reported that the state may not receive complete information on the total compensation paid to provider executives and may not have the capacity to oversee their finances adequately. Also, COFAR has raised concerns that increasing amounts of money going to provider executives has not translated into higher pay for direct-care workers in Massachusetts.
The state auditor reported last year that in one case involving the May Institute, a DDS provider, hundreds of thousands of dollars in state funds had been paid to company executives in excess of the regulatory cap. COFAR’s executive compensation survey found that the May Institute CEO received $404,900 in compensation in FY 2011 and that a total of 12 company executives were paid a total of $2.5 million that year.
At $404,900, the May Institute CEO was the fifth highest paid CEO on COFAR’s list. Community Systems, Inc. topped the COFAR list of the highest paid CEOs, with two employees listed on the company’s federal tax filing as serving as company CEOs in FY 2011 and drawing combined compensation of $526,755. Second on the list was Morgan Memorial Goodwill, whose CEO was listed as making $464,572 in FY 2012.
Community Systems federal tax filing states that the company, which is based in Forestdale, MA, took in $14.4 million in revenues in Fiscal Year 2011. Of that amount, the company received $11.6 million from DDS, according to a 2011 financial report filed with the state’s Operational Services Division.
(The Community Systems OSD report lists only compensation in FY 2011 for two executive directors and does not list the company CEOs. As a result, OSD appears to have disallowed only $21,000 in funding to the company as having been earned above the regulatory compensation cap. This appears to confirm COFAR’s finding that the OSD receives incomplete information from providers on executive compensation.)
In addition to the CEOs listed on the Community Systems federal tax report, two employees were listed as executive directors of the company that year and made a combined total of $276,538. The OSD report lists the two executive directors of the company as having made only $154,473.
The following chart, based on COFAR’s survey of some 250 providers, shows 30 of the providers with the top earning CEOs (click on it to enlarge).
Sara Duzan’s guardian was formerly against the use of restraints on her
The court-appointed guardian for Sara Duzan, who is now supportive of her care in a group home where Sara has been subjected to restraints and seclusion, strongly opposed the use of those methods for controlling her behavior in two previous publicly funded residences.
Emails and other records in the case show that both Lynne Turner, Sara’s guardian, and Turner’s husband, Michael, were highly critical in late 2011 and early 2012 of Sara’s care and treatment at the Spaulding Youth Center in New Hampshire and the Kolburne School in New Marlborough, MA. In addition, Michael Turner, who was the attorney for Sara’s family until December 2011, criticized Sara’s previous guardian for having cut off all communication between Sara and her family.
The circumstances of 2011 and 2012 appear to have repeated themselves in the past several months, only it is now Lynne Turner who, as Sara’s guardian, has cut off all family communication with her and appears to be in support of the use of physical restraints on her and enforced seclusion in her current residence operated by Becket Family of Services.
Lynne Turner has billed the family for her guardianship services, but the Duzans have refused to pay, contending they were initially assured there would be no charge for those services and that there was never any court order or agreement that they pay her.
I sent several email and telephone requests to Lynne Turner, asking, among other things, whether she has visited Sara yet in the Becket residence and whether she is satisfied that the staff there are using restraints and seclusion appropriately on Sara. Other than to say in an email that she is a sole practicing attorney, in response to a question about her professional relationship to her husband, Turner did not respond to my questions.
Meanwhile, Massachusetts state Representative Paul McMurtry, whose district includes the Duzans’ hometown of Westwood, said he was committed “to doing everything possible to realize the goal of Sara’s return to her family.” McMurtry called the cutoff in all family communication with Sara “heartbreaking,” and said he finds it “unacceptable” that Sara’s parents have been forced to spend a large portion of their life savings in legal fees in a battle in the probate court system over their daughter’s care.
Guardian says care and treatment plan is appropriate at Becket residence
In a guardianship report filed with the Norfolk County Probate Court on December 13, Lynne Turner stated that Sara’s care and treatment plan in her current residence “appears to be appropriate,” and that the “director and clinical director have been very attentive to Sara’s behavior and needs.” Turner’s report did not mention the use of restraints or seclusion on Sara by that facility. Turner also stated in the report that she had never visited Sara in the Becket residence, in which she had placed her on July 24.
Sara was placed in physical restraints in the Becket residence 37 times and was placed in seclusion 59 times between last July and November, according to clinical records filed with Turner’s guardianship report.
Turner, who was appointed Sara’s guardian in December 2011, has upheld restrictions on all family contact with Sara in her current residence. The Duzans have been prohibited from visiting her since last July and from contacting her in any way since before Thanksgiving. Turner further prevented the family even from sending Sara presents at Christmas; and Sara’s mother, Maryann, says flowers sent by the family to Sara were not given to her.
Maryann Duzan contends that the reason for the latest cutoff in all family contact with Sara has been to prevent the family from learning more about the extent of the use of restraints and seclusion on Sara in her current residence and the effect those techniques are having on her. Restraints, in particular, have become increasingly controversial, and have been found to cause injury and death in some instances to persons subjected to them.
“We just want our daughter back,” her father, Paul Duzan, said. “We’re very concerned about what’s happening to her, and we’re not even allowed to ask about it.”
Sara, now 22, has a rare genetic disorder called Smith Magenis Syndrome, which is characterized by intellectual disability and behavioral outbursts. The Duzans lost their guardianship of Sara in 2009, stemming from an admission by Maryann that she once slapped her daughter on the cheek, and the conclusion of a probate judge that the family has been uncooperative with providers in caring for her.
Maryann says she slapped Sara lightly because Sara was acting aggressively while at home and was threatening to throw a radio at her. Her admission of the slap, however, led to an investigation of the Duzans by the Disabled Persons Protection Commission, which then filed motions in probate court to limit the family’s guardianship of Sara. In 2010, a probate court judge ruled the family unfit as guardians, but nevertheless characterized the Duzans as a loving family toward Sara.
Maryann maintains that while Sara was in their care, the family never used restraints on her even when she had behavioral issues at home. The Duzans and many other families with children with Smith Magenis Syndrome maintain that the use of restraints, in particular, on persons with the syndrome is counter-productive and actually makes their behavior more violent.
Guardian said restraints in previous residences were abusive
In 2011 and 2012, Lynne Turner appeared to have been in strong agreement with the Duzans that restraints used on Sara were inappropriate and counter-productive. In a January 24, 2012 email, written shortly after her appointment as Sara’s guardian, Turner stated that Sara “has been abused in two programs.” Turner’s statement was in reference to allegations by the Duzan family that Sara had been abusively restrained at the Spaulding Youth Center between 2008 and 2010, and at the Kolburne School in 2011.
Turner’s January 2012 email alleging abuse of Sara in the two programs was written to Aaron Ginsberg, a staff attorney for the New Hampshire Disabilities Rights Center, who found that the Spaulding Center had subjected Sara to hundreds of inappropriate restraints between 2008 and 2010. Ginsberg noted that Sara frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg stated in a DRC memo.

Photo taken by Maryann Duzan of injuries to Sara’s arms, which Maryann claims were the result of physical restraints used on her at the Kolburne School in 2011. At the time, Lynne Turner, now Sara’s guardian, was highly critical of the use of restraints on Sara.

Photo taken by Maryann of injuries to Sara’s right foot, allegedly resulting from restraints used on her at the Kolburne School in 2011.
Complaints alleged abuse at Spaulding and Kolburne
Lynne Turner’s January 24, 2012 email to Ginsberg included an attached draft document, which echoed Ginsberg’s findings regarding the restraints used on Sara at Spaulding. The document was a draft complaint to the director of the Bureau of Special Education Appeals, charging that Sara was being “brutalized” at the Spaulding facility, and that the Westwood School District, which was then providing her special education services, had failed to investigate the alleged abuse.
The allegations in the draft BSEA complaint were originally made in a legal claim, sent by Lynne Turner’s husband, Michael, to Governor Deval Patrick and Attorney General Martha Coakley on March 11, 2011. Michael Turner, with whom Lynne Turner shares a law office in Marion, MA, was working at the time as the Duzans’ attorney in their probate court battle over Sara’s care and guardianship. His claim announced that he intended to file a $5 million lawsuit against DDS and the Disabled Persons Protection Commission on behalf of the Duzans in connection with the alleged abuse of Sara at the Spaulding and Kolburne facilities. The lawsuit was never filed.
The draft complaint to the BSEA and Michael Turner’s legal claim both alleged that Sara was being restrained for up to 70 hours a week “in dangerous restraints,” and that she was “hit, tripped, locked in her room (at the Spaulding facility) and routinely demeaned by Spaulding Staff on Facebook and in person.” According to the documents, Maryann and Paul Duzan “reported this action to the responsible agencies, including Westwood (the Westwood School District), who left her at Spaulding for months of continued abuse after the egregious physical and emotional abuse became known.”
The draft BSEA complaint and Michael Turner’s claim added that:
Quite often, Sara was restrained naked, by male staff, and female staff just stood by and watched. The staff commented about Sara regularly on their Face Book pages. All of this information was brought to Westwood’s attention but Westwood did nothing. Westwood allowed the cruel torture to continue not only in violation of Massachusetts’ Law but Federal Law and the International Treaty the United States signed against torture. Westwood did not care and did nothing; Westwood continued to blame the parents…
…This pattern is seen during Sara’s elementary years when Westwood built a box in Sara’s classroom in which to dump Sara, in which she would scream for hours and no one would care for her or help her. Westwood never informed the parents of this cell nor was this cell in the IEP (Individual Education Plan for Sara) or in a behavior plan the parents signed. This cell was only discovered by the parents when Sara came home with some of her teeth in a plastic bag. Sara lost a number of teeth while in the cell, urinated on herself because they would not let her out. The abuse Westwood visited upon Sara, at Spaulding, was and is only part of the years of abuse perpetrated upon Sara by Westwood.
Michael Turner’s claim also alleged that at the Kolburne School, Sara became infected with MRSA and ringworm, and that “the DPPC (Massachusetts Disabled Persons Protection Commission) has done nothing about protecting Sara from the mistreatment at Kolburne and has arbitrarily screened out all complaints out (sic).”
Earlier, in a November 16, 2011 email, prior to her appointment as Sara’s guardian, Lynne Turner offered advice to Maryann Duzan on seeking an investigation by the Disability Law Center, a federally funded legal advocacy organization, of Sara’s care at the Kolburne facility. In her email, Turner criticized both the Massachusetts Department of Developmental Services and the Disabled Persons Protection Commission for allegedly failing to respond to the Duzans’ requests that the two agencies investigate Sara’s care at Kolburne. Turner advised Maryann Duzan to say she had requested an investigation of Sara’s care by the Disability Law Center:
… because DPPC and DDS did not exercise their investigatory powers appropriately. They clearly failed to exercise due diligence in the investigation of Sara Duzan’s mistreatment and her injuries and failed to keep her safe. The Disability Law Center has pictures of Sara’s injuries which substantiate the abuse and neglect suffered at the hands of Kolburn (sic) staff which DDS and the DPPC have totally ignored and it would appear so has the Disability Law Center.

A photo of Sara at about the age of 10. She lived at home until the age of 18. The family says they never used restraints on Sara. The use of restraints on persons with Smith Magenis Syndrome has been criticized as counter-productive.
In 2009, the Duzans attempted to enlist the DPPC and DDS in investigating their abuse allegations. Both the DPPC and DDS, however, instead went after the Duzans themselves, accusing them of abusing Sara and causing her emotional distress. None of those allegations has been upheld, other than the charge that Sara’s mother, Maryann, had slapped her on the cheek on one occasion in 2009.
The draft BSEA complaint, attached by Lynne Turner to her email to Ginsberg, and Michael Turner’s claim to the governor and attorney general both characterized the allegations against Maryann and other family members of abuse as “egregiously false,” and stated that they had led to the removal of the Duzan family members as Sara’s guardians.
Maryann Duzan says the Disability Law Center declined the family’s requests in 2010 and 2011 to investigate Sara’s care at Spaulding and later Kolburne. Last week, the family contacted the Disability Law Center once again, seeking an investigation of Sara’s current situation.
Michael Turner alleged Sara was “brutalized” at Spaulding and Kolburne
In June 2011, Michael Turner filed a motion with the Norfolk County Probate Court to remove Sara from the Kolburne School, stating that Sara was being mistreated there. In his motion, Turner maintained that in a previous special education program in a public school in Arlington, MA, Sara had not been subjected to any restraints, but that “Spaulding and Kolburne brutalize Sara with restraints day after day.” Turner added that: “Kolburne now claims the injuries in the photos are self-inflicted wounds. One can only wonder what this brutal behavior by the various staff members has done to damage Sara emotionally, physically and socially.”
Michael Turner also alleged that Sara’s then guardian, Daniel Smith, the executive director of the Arc of Greater Fall River, had done nothing about the alleged abuse inflicted on Sara at Kolburne, and that Smith had inappropriately cut off all contact between Sara and her family. Turner’s motion stated that the cutoff in communication:
…only continues the outrageous abuse Kolburne has suffered (sic) upon Sara which Dan Smith has pictures of and written reports of each incident per the Department of Education Regulations.
The only possible reason for Dan Smith to deny parental access to Sara Duzan is so they will not lean of the ongoing abuse of Sara which Daniel Smith has known of since Sara was at the Spaulding Center and did nothing.
Michael Turner’s motion to remove Sara from Kolburne was denied by Probate Court Judge Angela Ordonez, resulting in an additional six months of confinement for Sara at the facility; however, Sara was returned to her parents’ home in December 2011 on Lynne Turner’s order as Sara’s new guardian. She lived at home until January 2013 with no state services or state-agency scrutiny, according to Maryann. At that point, Lynne Turner placed her in a residential program in Brewster where she remained until she turned 22 last July. Turner then placed her in the Becket residence, which is a DDS-funded facility. The Duzans say they objected to the Becket placement, requesting that Sara be returned home, but Turner denied their request.
On the home page of Michael Turner’s law firm website, a video from the Nancy Grace show contains a highly critical news feature about teachers in the Barnstable School District using physical restraints on autistic children. Michael Turner is seen commenting in the video that by placing one particular child in restraints, a teacher was “training her to become a very violent child.” The website states that Michael Turner “has been representing children and their families in school related issues for many years in the areas of Special Education Services (and) rights and appeals of deficient services…”
In an email sent to Lynne Turner on January 28, I asked whether she supported her husband’s statements about restraints in the video on his website. As noted above, I received no response to that question or to a question about her position on restraints at the Becket residence.
The family has declined to pay Turner for guardianship services
The Duzan family has declined to pay for Lynne Turner’s guardianship services since she was appointed as Sara’s guardian by the probate court in December 2011. The family contends the court order contained no provision for payment of Turner and that it is not their responsibility to pay her. The Duzans also contend that Turner has not been acting in Sara’s best interest by allowing her to remain in the Becket residence and by cutting off their communication with her.
Turner sent a bill to the family for payment for guardianship services, dated June 7, 2012, for $4,210. The bill claimed roughly 77 hours of work done by Turner, and 7 hours by a paralegal in her firm, both at a $50-per-hour rate, since Turner’s appointment as guardian in December 2011. Turner initially proposed a contract for her guardianship services for Sara that would have required the Duzan family to pay fees of $200 per hour to Turner, $200 per hour to another unnamed attorney in her firm, and $75 per hour to a paralegal and $25 per hour to a clerk in the firm.
The proposed contract was signed by Lynne Turner, but the Duzans refused to sign it. Maryann and her son, David, said they had been assured by Michael Turner, prior to proposing his wife as Sara’s guardian, that there would not be a charge for her services. Lynne Turner’s proposed contract, however, referred to a court order that the family pay for Turner’s guardianship services, but Maryann maintains there was never a court order to that effect.
Lynne Turner subsequently proposed a contract for guardianship services that specified a $50-per-hour charge to the Duzans for her services, $50 per hour to another unnamed attorney in the firm, $25 per hour to a paralegal, and no charge for clerical services. The Duzans refused to sign that contract as well.
The Duzan family recently retained attorney Thomas Frain, who is COFAR’s president, to represent them in their efforts to return Sara home. In response to a request from Frain to Lynne Turner for records relating to Sara’s care in the Becket residence, Turner responded that she would provide the records upon payment of $10,000 to her. She said that the requested payment included $5,000 for producing the records themselves and an additional $5,000 for her unpaid guardianship services for Sara Duzan.
“Ten thousand dollars is a high price to pay to find out if your loved one is alive, well and being cared for,” Paul Duzan said.
To contact the governor’s office about this case:
Contact info for the Governor’s Office: Massachusetts State House Office of the Governor Room 105 Boston, MA 02133 Phone: 617.725.4005 888.870.7770 (in state) Fax: 617.727.9725 TTY: 617.727.3666 Email: constituent.services@state.ma.us
Also, please sign our petition to the governor to bring Sara home on change.org. Thanks!
Father frustrated for years in gaining guardianship of his intellectually disabled son
Stan McDonald readily acknowledges that his mildly intellectually disabled son, Andy, was dangerously out of control one evening nearly 25 years ago when, living with his father and stepmother, he made threats in two instances to two female children who were their neighbors in Sherborn, MA.
Andy’s behavior has improved greatly since then, McDonald says. Yet, due to a series of misinterpretations about the incidents that occurred in 1990, Andy is still considered to this day by both his court-appointed guardian and the probate court to be a danger to his community. As a result, he has been prohibited from ever returning to his hometown, and Stan has been deemed unfit to be his guardian for advocating for supervised home visits for him.
In many respects, Andy’s case is similar to that of Sara Duzan, a young woman who, as we’ve reported, has been living in a group home with no contact permitted with her family. Both cases appear to illustrate the dangers to family members of giving up guardianship of an incapacitated person for whatever reasons, and they show how court-appointed guardians fail to act in the ward’s best interest in many of these situations. In 1986, Stan and his former wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him.
The history of Andy’s care is one in which court-appointed guardians and clinicians have consistently overridden the wishes of his family members, leading, in many cases to disastrous results.
In Andy’s case, contact with Stan and Andy’s stepmother, Ellen, has not been cut off, although their contact is restricted. Stan and Ellen are allowed to visit him in his group home in Westborough two to three times per month, and Stan, now 78, is allowed to call Andy, now 46, once or twice a week on the phone.
Stan and Ellen are also permitted to take Andy on outings in the community near his group home. But the position of the probate court and of Andy’s current guardian, Dennis Yeaw, a Shrewsbury-based attorney, is that Andy is sexually dangerous even though he was never charged with a sexual offense. Yeaw has had some 100 wards in addition to Andy.
Not only is the prospect of Andy’s ever returning home not even to be discussed, but a probate court judge ruled in 2006 that Stan McDonald must personally tell his son, in the presence of clinicians, that his son would never be allowed to go home again. McDonald said he has refused to say something like that to Andy, contending it would severely depress him and would be a violation of their rights of freedom of speech and association.
Andy has not exhibited any significant behavioral problems in close to a decade and has been taken on community outings to many places other than his home without any behavioral incidents, according to Stan and to notations in his clinical care plan. Yet, he has in the past told clinicians that he has had sexual fantasies about children; and that, combined with a mistaken probate court finding that he was arrested for sexual offenses in 1990, appear to have led the court to ban him for life from visits home.
In 1995 and 1996, Andy was allowed three supervised visits to Stan and Ellen in their Sherborn home, and those visits took place without incident, according to Stan. After that time, however, the visits were prohibited for no clear reason, Stan says.
Misrepresentation of his arrests
In a 2006 ruling in which he denied Stan’s bid for guardianship of Andy, Middlesex County Probate Court Judge Edward Rockett stated that Andy had been arrested in 1990 for sexual assaults of three young girls who lived across the street in Sherborn. That was not true, however. Two arrest reports from that year tell a much different story.
Andy was arrested in May 1990 for threatening an unidentified person during a telephone call, according to the district court record. The nature of the threats was not disclosed. In July of that year, he was charged with disturbing the peace in downtown Sherborn after he followed a young woman and allegedly threatened to kill her father, according to a Sherborn Police Department report. That same day, he was charged with assault after he punched Ellen, his stepmother, the same report stated. Stan says Ellen had driven Andy to the police station for his own protection after the incident in downtown Sherborn. On the way, he says, Andy was flailing his arms in protest and struck Ellen unintentionally.
There is no indication in the police reports that Andy ever sexually assaulted anyone. Immediately after the July 1990 incidents, Stan McDonald had Andy committed to McLean Hospital in Belmont.
Andy’s care under court-appointed guardianship was marked by inappropriate placements and decisions
Over the years, Andy has been subjected to inappropriate residential placements and treatment, in many cases because a series of court-appointed guardians, state agencies, and providers made the wrong decisions regarding his care, Stan says. Stan makes an exception for Stefan Grotz, the first in the series of Andy’s guardians, who was appointed as part of the agreement between Stan and his first wife in their divorce. Grotz authorized Stan to be his personal representative in Andy’s care, but Grotz stepped down as Andy’s guardian in 1991 because he felt he lived too far away from Andy’s then placement at Westborough State Hospital.
After he was admitted to McLean Hospital in 1990, Andy was first sent to Taunton State Hospital when McDonald’s insurance ran out, and subsequently to Westborough State, a Department of Mental Health facility. Stan had originally applied in 1989 for a placement for Andy in a Department of Developmental Services facility, but his eligibility was originally denied. Stan appealed, and DDS approved Andy’s application as a client in 1990; but by that time, Andy was in Westborough State, where he remained as a DDS client until 1993.
The Westborough State placement was inappropriate. Andy had earlier been found not to be mentally ill by DMH, which had determined that he would actually be harmed if housed in a facility for persons with severe mental illness. That turned out to be the case. He “deteriorated” in Westborough State Hospital for three years, Stan says. Stan was prohibited from visiting him for months at a time. In January 1993, Andy was sexually assaulted at the hospital by another patient. When the hospital refused an independent investigation, Stan says he filed a complaint with the Disabled Persons Protection Commission, which found the hospital negligent.
According to Stan, when Andy was admitted to Westborough State, he was non-psychotic and medication free. But after months of confinement in a locked ward with severely mentally ill and violent patients, Andy acted out in frustration, kicking over a trash can at one point. The staff’s response was to begin medicating him, which only increased his frustration and depression, resulting in increasing medications, in a vicious cycle.
Stan says DDS finally placed Andy in his current group home in 1993. Today, he says, Andy’s care in the Community Resources for Justice group home is very good, and Stan’s and Ellen’s relationship with the current staff in the residence is excellent. However, the care in Andy’s early years there was frequently substandard.
In a sworn affidavit in 1999, Cameron Fraser, a staff worker in the group home in 1994 and 1995, stated that a manager of the residence told him in December 1994 that “‘he (Andy) brings in a lot of money to this program,'” and that it was “necessary to document in the daily log regular behavioral instances” in order to ensure that Andy would remain in the program. Fraser said he observed a number of instances in which the manager deliberately incited Andy into fits of rage, which required the staff to place him in restraints.
Fraser also stated that the cupboards in the group home were frequently bare of food while he was there and the residents were often fed “the barest of meals, lacking basic nutritional values…” In addition, Fraser said that while other residents of the facility were allowed out on un-escorted walks, Andy was confined to the premises because he was considered a threat to the community. However, Fraser said he always found Andy to be “respectful and courteous to all around him.” Fraser further noted that Andy’s spirits were always buoyed by visits from Stan and Ellen.
Stan says that for many years, Andy’s dental care was inadequate as well, and that court-appointed guardians did little or nothing to improve that. In 1994, after his admission to the Community Resources for Justice group home, seven of Andy’s teeth were found to be badly decayed, but nothing was done about that for five years.
Around 1995, Stan says, he persuaded Andy’s then guardian to have Andy sent to Andy’s family dentist, who was shocked at the condition of his teeth and wrote to the then director of the group home, suggesting a stringent regime of dental hygiene for Andy. Stan says the group home director not only ignored the dentist’s advice, but ordered that Andy not return to the dentist. In 1999, Andy had to have two teeth extracted, and in 2007, he had to have three additional tooth extractions and multiple fillings under general anesthesia.
In addition, Andy was over-medicated for many years with Stelazine, an anti-psychotic drug, which caused him to develop Tardive Dyskinesia, a disorder resulting in involuntary, repetitive body movements. Court-appointed guardians, he says, did little or nothing to address that problem either. Stan personally got a court order and paid for an independent evaluation of Andy’s medications. This resulted in discontinuing the Stelazine and replacement of the prescribing doctor.
Today, the major problem with Andy’s group home is that it has become crowded with the addition of a fifth resident, and some of the residents have mental illness and escape impulses, making it necessary to keep the residence locked and the door alarmed, Stan says. As a result of the intense supervision needed for those residents, Andy gets few opportunities for fresh air and exercise. Also, the other residents of the group home are either 20 years older than Andy or are less functional intellectually and behaviorally, he says.
Supporters urge restoration of Stan McDonald’s guardianship of Andy
In May of last year, State Representative David Linsky, wrote a letter in support of Stan’s appointment as Andy’s guardian, noting that he has known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”
John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, wrote to the Department of Developmental Services in June to say that he has frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”
And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. Stan McDonald maintains that if he was appointed as Andy’s guardian, he would keep Andy in his present program and would agree to having Andy’s supervised during visits home.
On January 6, I sent an email to Scott Harshbarger, Board president of Community Resources for Justice, the nonprofit organization that operates Andy’s group home, and asked whether he would consider supporting supervised home visits for Andy and the restoration of Stan McDonald’s guardianship of his son. I have not received a response from Harshbarger, who is a former Massachusetts attorney general and former president of the citizens watchdog group Common Cause.
Questions raised about Andy’s dangerousness
In his 2006 ruling, Judge Rockett cited testimony from the clinical director of Andy’s group home that Andy had told him he had had sexual fantasies about children and was therefore sexually dangerous. Rockett concluded that returning home to Sherborn had “acquired a magical meaning for him (Andy)” and that he must never be allowed to return there. But Rockett also acknowledged in his ruling that there was testimony as well that Andy “will always say what he thinks other people want to hear. This causes his statements to be very inconsistent. He will say one thing to his father and the opposite to a staff person.”
McDonald contends the misstatement in Rockett’s ruling that Andy had assaulted three young girls was based on misinformation provided to the judge by the Department of Developmental Services. Andrew’s court-appointed guardian, Dennis Yeaw, however, has consistently cited Rockett’s ruling in denying home visits to Andy. In an email to COFAR, Yeaw defended his position and maintained that “Mr. McDonald is the only person, well maybe Mr. McDonald’s wife as well, who thinks it’s OK for Andy to go to Sherborn.”
But not all clinicians have supported the ban on Andy’s returning to his hometown. In 2000, Ronald Ebert, a psychologist, recommended that the staff of Andy’s group home try a “trial visit” to the Sherborn Inn to hear Stan, an acclaimed jazz musician, play in his band if it could be demonstrated that the persons Andy was accused in 1990 of threatening no longer lived in town. In fact, Stan says, those persons had moved away as of that time. “If such visits can be managed successfully, there is no reason why they could not be built into his visit schedule…,” Ebert wrote. But Ebert’s recommendation was never heeded, and visits to the Inn have not been allowed.
There is no doubt that the conditions under which Andy lives have greatly improved in recent years. But it seems to us that those in charge of Andy’s care still haven’t fully recognized the progress that Andy himself has made over the years.
There is no question that the charge that Andy is sexually dangerous is an explosive one. But the record regarding this charge contains misinformation and contradictions. The insidious nature of a charge of sexual dangerousness, if it is untrue, is that it has been used and could be used at any time in the future to restrict Andy’s freedom to a much more extreme degree than is even now the case.
Stan notes that a clinical team report or assessment was done of Andy’s level of disability in 2012 for the probate court, but neither Stan nor Ellen were interviewed for that assessment. The probate court’s instructions for completing clinical team reports, however, state that clinicians should interview the individual “and persons who know him/her well” (emphasis in the original) in conducting those assessments. Neither Stan nor Ellen were provided with a copy of the report or informed of its conclusions.
We think a new and independent clinical evaluation should be done that takes into account Andy’s current record of behavior and includes input from his family and others with knowledge of Andy. We would also hope that such a report would be provided to Stan and Ellen for their review and comment.
After all, it is only family members in this case — namely Stan and Ellen — who have shown they have the knowledge and unconditional love and support needed to provide the best possible care for Andy.
The politically incorrect idea of bringing congregate and community care together
Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.
In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community. A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.
Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades ago.
In the second initiative, the Arc of Jacksonville in Florida has been awarded state funding and tax credits to help construct a “planned neighborhood” in that state for adults with intellectual and developmental disabilities, according to The Florida Times Union. The newspaper reported that the “Arc Village” will house about 120 adults – ages 18 and older – in 97 one- and two-bedroom apartments. The $17.7 million project will allow residents to “live, work, shop, recreate, and socialize,” in one place.
Unfortunately, neither of these innovative initiatives would be likely to move forward in the “progressive” state of Massachusetts, and neither may get the backing of the Obama administration. That’s because each of the proposals envisions providing services to a large number of people in one location — a non-starter to the ideological opponents of “congregate care.”
Congregate care, you see, is “institutional,” and therefore bad by definition for people with developmental disabilities. It’s apparently better that they live in small group homes or apartments dispersed throughout the state. We happen to think that placing everyone in dispersed group homes or apartments is actually a recipe for isolation and a new form of warehousing of people with developmental disabilities, all the while lining the pockets of the executives of hundreds of state-funded, corporate providers. (More about that in a coming post.)
But the Patrick administration in Massachusetts has voiced its opposition to congregate care and has moved to close four out of six remaining developmental centers in this state. Two of those centers have now been shut and most the residents have moved either to one of the two remaining centers or to group homes throughout the commonwealth. Longstanding proposals by advocates of those developmental centers to more effectively merge them with their surrounding communities — similar to the Delaware proposal for the Stockley Center — were all rebuffed by the Patrick administration.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) are moving to change their definition of federally reimbursable community-based care to exclude even group homes that happen to be located on the grounds of, or even near to, a public institution such as a developmental center. And the National Council on Disability has declared that an “institution” is a “facility of four or more people who did not choose to live together.” The NCD’s definition, which applies even to many group homes, was contained in a report in 2012 that states in its first sentence that closure of all such “institutions” should be “a top public policy priority in every state where such institutions exist.” The NCD advises the president and Congress on disability issues.
It’s hard to imagine the NCD supporting the Arc of Jacksonville’s proposal, in particular, which would establish a single setting, albeit a “neighborhood,” which would house 120 clients. And the Stockley Center proposal would not appear to conform to the CMS’s proposed definition of community-based care.
It seems to us, though, that the inclusive approaches being proposed in Delaware and Florida represent the future of care of the developmentally disabled in this country. Both proposals appear to recognize that congregate care is a valid option for people who want and need it, and that it can coexist with, and even be a part of, community-based care. Note that we’re not saying congregate care is right for everyone or that it should replace care in smaller settings.
The administration of Delaware Governor Jack Markell certainly appears to recognize that a congregate care center such as Stockley, which meets federal Intermediate Care Facility ICF/DD) standards, is worth maintaining as a residential option for its current residents. The Delaware state task force report states among its “general principles” that its proposal for the Stockley Center would include “a commitment to maintain and build upon a peaceful environment that the people at Stockley Center currently enjoy.”
Rita Landgraf, secretary of the Delaware Department of Health and Social Services, was quoted in The Wilmington (DE) News Journal as saying: “We do have individuals who still live here on site. It is critically important that we bring inclusion to them. This was not a discussion of closing Stockley. Sometimes I hear that, out in the public. But we are not closing Stockley.”
Among the specific task force proposals for the Stockley Center that would establish the center as a critical component of community-based care in Delaware are the following:
- Creation at the Stockley facility of a “Center for Excellence,” which would offer “integrated health support and disease prevention services to communities for which health services are hard to access.”
- Creation of a facility at Stockley to support respite care, both for individuals with disabilities in the community system and caregivers.
- Expanding the use of the Stockley pool or other therapeutic facilities for individuals with disabilities “first in Sussex County (DE) and beyond, as feasible.”
- Creating an “intergenerational multi-use center for wellness that supports active living and wellness, including classes for smoking cessation, fitness, nutrition, behavioral health, obesity, cardiovascular disease and stress management.”
- Developing fully accessible community vegetable gardens for an “integrated community” of county residents, including low income families; and hosting a farmers’ market.
- Creating a “model of mixed-use development”on the Stockley campus site, including affordable housing, stores, restaurants, dental and medical, and recreational facilities.
- Creating a training center to provide professional development for medical and care providers.
- Encouraging schools to use the Stockley property for nature and science instruction.
- Providing education, support, life skills and vocational or job training programs for people with disabilities.
- Creating a center for volunteer and nonprofit groups.
- Creating an outdoor trail system for users of all ages and abilities.
Contrast the excitement and vision of that approach with Massachusetts where we’ve seen only the systematic dismantling of congregate care for people with developmental disabilities. We will soon be down to two remaining ICF-level care centers, and what remains of state-operated care is under siege as facilities and services continue to be privatized. It’s refreshing to know that not all state administrations have that mindset, and that in some places, new ideas are being tried by people who are not blinded by outdated ideologies. We, however, are being left in their dust.
Questions surround care of Sara Duzan in group home
Sara Duzan has been placed in physical restraints in a group home 37 times since she was moved there on July 24, and the restraints continued through the month of November, according to staff records provided to the Duzan family.
A “baseline behavioral data” report on Sara’s care, dated December 11, states that there were 7 restraints imposed on Sara over a 7-day period in July; 10 restraints in August; 5 in September; 7 in October; and 8 in November. The report also indicates that behavioral episodes leading to the seclusion of Sara in her room in the Westminster residence also continued to take place each month. There were 7 such episodes in July; 16 in August; 9 in September, 15 in October, and 12 in November.
The report of the clinical staff at the state-funded Becket Family of Services residence appears to raise questions as to whether Sara has made progress since she was placed there on July 24. Since then, contact with her family was sharply restricted and then cut off entirely by the provider and her current guardian. The Duzan family, who lost their guardianship of Sara in 2009, is fighting to regain their guardianship and to bring her back to their home.

Sara’s bedroom in her family home in Westwood, where she lived 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.
DDS challenge to mother’s guardianship of her son dismissed
The mother of an intellectually disabled man, who has been locked in a dispute with the Department of Developmental Services for several years over her son’s medical needs, will be able to remain as his guardian, according to a probate court agreement reached last week.
A Middlesex County Probate Court judge last week signed off on the dismissal of a year-long effort by the DDS to remove Patricia Feeley as guardian of her 27-year-old son, Michael. DDS had filed a petition in probate court in November 2012 to appoint James Feld, an attorney, as Michael’s guardian, even though Feld had never met Michael.
The DDS’s long-running dispute with Feeley, a COFAR Board member, has centered around Feeley’s contention that Michael, who has type 1 diabetes, needs a residential care setting with 24-hour nursing. Feeley has been trying for years to find a suitable residential placement for her son, who has lived at home his entire life. DDS has taken the position that Michael doesn’t need round-the-clock nursing.
DDS signed a stipulation to dismiss its challenge to Feeley’s guardianship during a probate court hearing last week, according to Stephen Sheehy, an attorney representing Feeley. Sheehy said he believed that DDS “came to the hearing prepared to dismiss the case because they recognized that Pat (Feeley) was doing a good job as Michael’s guardian and this was not a proper forum to deal with a dispute over a (residential) placement.”
In filing its original petition to remove Feeley as guardian, DDS had argued that Feeley was not acting in her son’s best interest in rejecting residential placements for him that the Department had offered. The Department’s petition also cited excessive “clutter” in Feeley’s home as a reason for removing Feeley as guardian. However, DDS did not allege any neglect or abuse on Feeley’s part, and even acknowledged she is devoted to her son.
Feeley said this week that she was glad of the dismissal of the guardianship challenge and hopeful “that somehow Michael will be offered a placement appropriate to his needs. He has been waiting for six years.” She added that, “I hope DDS will realize and take this (dismissal of the guardianship petition) as an affirmation that Michael’s needs are Michael’s needs. That’s what this is all about, not what DDS wants.”
Feeley added that DDS has never produced a clinical document to back up its contention that Michael does not need 24-hour nursing care. Feeley, however, did provide the court with a May 28, 2010 letter from a physician at Children’s Hospital in Boston, who wrote that Michael’s blood glucose spikes at times “for no apparent reason,” and that “it is not possible to predict when that might occur.” The doctor’s assessment continued that, “A nurse needs to be present and able to attend to Michael’s needs at any time to avoid a delay in Mike receiving appropriate medical intervention.”
Feeley said her son requires as many as seven injections of insulin per day. He also has a profound intellectual disability, is non-verbal and is unable to dress or bathe himself. Feeley, 65, who works as a part-time clinical lab technician and is a certified nurse assistant, currently administers the injections herself, monitors Michael’s blood glucose, and personally provides all other care at home for him. Michael’s extensive care needs have prevented her from working full time.
We are happy that DDS has finally realized it brought its dispute with Pat Feeley over the care of her son to the wrong judicial forum. Why DDS subjected Feeley to a frightening, year-long battle to retain guardianship and why the Department subjected taxpayers to the expense of an unnecessary probate court battle are troubling questions.
Based on what is apparently the only clinical document submitted in the case — the letter from the Children’s Hospital doctor — Michael does appear to need 24-hour nursing. We hope the outcome of this guardianship challenge finally spurs DDS to do the right thing and find a placement appropriate to Michael’s needs.
The system continues to fail the most vulnerable in the Templeton case
It seems that as events unfold in the wake of the alleged fatal assault of an intellectually disabled man at the Templeton Developmental Center in September, the system continues to fail everyone it was intended to protect.
Last week, Anthony Remillard was found competent to stand trial in connection with the death of Dennis Perry whom Remillard allegedly assaulted while both were in the Templeton Center’s dairy barn. As of this week, Remillard was being held without bail in the Worcester County House of Corrections.
We’ve already written here a number of times about our concern that Remillard was inappropriately placed at Templeton due to his apparently high level of dangerousness, and was not under sufficiently close supervision while there. However, given that Remillard is himself intellectually disabled, it seems to us that the Worcester County House of Corrections is an equally inappropriate place for this 22-year-old man.
Bonnie Valade is the mother of Tony Welcome, a Templeton resident who has himself had some previous scrapes with the criminal justice system and spent time at the same county jail facility now housing Anthony Remillard. She maintains that jail was wrong for her son, who she said was abused there, and will be equally wrong for Remillard. In an email, Valade had this to say:
My son was badly beaten (at the Worcester County House of Corrections) simply because he put his arm around an inmate saying ‘hello.’ The other inmates took everything we brought for him including his radio. He was sexually abused. They put him in a suicide cell just to keep him away from the population. If anyone knows about a suicide cell…it contains nothing not even clothes, only their underwear.
People with intellectual disabilities need clinical and other therapeutic services. They don’t tend to receive those services when they end up in correctional facilities. And they do end up in correctional facilities more often, it seems, than people of normal intelligence.
A recent article on the website Disabled-World.com notes that intellectually disabled people constitute “a small but growing percentage” of suspects and offenders within the American criminal justice system. While they comprise between 2 and 3 percent of the general population in the country, they represent between 4 and 10 percent of the population in prison and an even larger portion of the population in juvenile facilities and jails.
Intellectually disabled people like Anthony Remillard and Tony Welcome need to be in places that provide them with supportive supervision, structure, and security. In many key respects, prisons provide none of those things. It’s hard to imagine that the behavioral issues that Anthony Remillard apparently had that led to the alleged assault on Dennis Perry are going to be dealt with in a positive way where he is now. And the fact that he has been found competent by a judge to stand trial in the alleged fatal assault means he could end up in prison for the rest of his life.
As has been pointed out by others in this case, the system failed Dennis Perry, and now it is failing Anthony Remillard. In both cases, it does not appear that sufficient supportive supervision, structure, or security were or are being provided.
Unfortunately, we see the potential for more of these systemic failures as Massachusetts and many other states continue to cut staffing at facilities such as Templeton, which currently meet strict federal standards of care. We’ve asked for a legislative hearing to examine, among other things, whether a major phase-down in staffing at Templeton in recent years resulted in the apparent failure to adequately supervise Remillard there.
Templeton and countless other facilities like it are being closed around the country in the name of deinstitutionalization. The closure process has not resulted in better lives for everyone, however. We are creating a largely privatized system of care in this country that in many respects provides less supervision, structure, and security than before.
Even the most ardent proponents of privatized, community-based care acknowledge that the community system isn’t working very well. In a recent op-ed piece, the president of the Massachusetts Association of Developmental Disabilities Providers, referred to the “funding disaster that has governed private programs” that now serve most of the people with disabilities in the state. The quality of the care provided by these private programs reflects that funding disaster. The programs are rife with poorly trained and poorly compensated staff and with the consequent problem of abuse and neglect.
And what then happens to the Anthony Remillard’s who are caught up in a system of care that cannot adequately serve them or protect others from them? In more and more instances, they end up in a much worse institutional system — the prison system.
It is now well known that deinstitutionalization of the mentally ill since the 1960’s has led to a continued increase in the population of mentally ill people in the nation’s prison system. We are only starting to realize that the same thing is happening with respect to people with intellectual disabilities.
A disappointing update on sheltered workshops in Massachusetts
In a post the other day, I suggested that state Department of Developmental Services Commissioner Elin Howe talk to family members of sheltered workshop participants, who maintain the programs have provided their loved ones with valuable social and skill-building activities.
But no such luck.
In an email notice send out yesterday, Howe announced that no new DDS clients will be referred to sheltered workshops in Massachusetts after January 1. As we feared, this is the beginning of the end of this valuable program in the state.
Sheltered workshops provide opportunities for developmentally disabled people to do assembly work and other tasks in group settings, usually for small amounts of pay. But for Commissioner Howe and other opponents of sheltered workshops, these programs are politically incorrect. Sheltered workshops, they argue, “segregate” disabled people from their non-disabled peers, apparently in just the same way schools and businesses in the South segregated blacks in the days before the Civil Rights movement.
Howe said sheltered workshop providers have been instructed to develop plans to “transition their workshop services to more integrated employment options,” meaning the plan is to place all workshop participants in the mainstream workforce.
Let’s leave aside the question whether it is really valid or fair to compare intellectually disabled people, whose guardians voluntarily place them in programs that provide them with work activities, to blacks who were forced until the 1960’s in this country to drink at separate water fountains and go to separate schools from whites.
For now, I would simply argue that we’re skeptical that closing programs that provide work activities for people with developmental services will somehow increase their overall employment opportunities.
I wonder if Commissioner Howe has thoroughly reviewed a 2011 report by the University of Massachusetts Boston on trends in employment prospects for people with developmental disabilities.
While the UMass report does appear to be biased against sheltered workshops, it notes that there has been relatively little movement so far toward mainstream employment of people with intellectual disabilities from sheltered workshops around the country. The report cites as reasons for this lack of movement, “staff resistance, family resistance, and funding structures that do not adequately support community-based services for people with high support needs.”
In other words, families like and want their loved ones to stay in sheltered workshops; and it takes money to place people with Intellectual and developmental disabilities into mainstream jobs with the types of supervision and support they need. And we’ve seen, that money isn’t there. All of this seems to raise questions about the wisdom of DDS’s decision to stop all new referrals to sheltered workshops.
In fact, one of the outcomes of closing sheltered workshops, which appears to be highlighted in the UMass report, is that many, if not most, of the people who are participating in sheltered workshops will end up being transferred to what are called “non-work” settings if those workshops are closed. Non-work settings, also known as day programs for people with developmental disabilities, may or may not provide them with meaningful work activities to do.
The UMass report noted that in 2010, there were 3,700 people with Intellectual disabilities in sheltered workshops in Massachusetts and about 3,500 people in “integrated employment.” However, there were about 9,500 people in “non-work” settings. The report stated that: “State, county, and local IDD (intellectual and developmental disabilities) dollars are increasingly being spent on CBNW (Community-based Non-Work) services and not integrated employment.”
So, our concern is that when all sheltered workshop programs are ultimately closed in Massachusetts, most of the former participants will end up in day programs where they do nothing and get no pay at all. And even if many of these people are placed in so-called integrated employment, the outcomes may not all be good. Howe certainly didn’t consult the Buonomo’s about their son’s disappointing experience working at Walmart, for instance.
Given all that, it was amusing to read in her email that Howe remains “strongly committed to working with all of our stakeholders” in ultimately closing all remaining sheltered workshops in the state. I don’t recall her asking for our opinion on it or acknowledging the opinions of most family members of sheltered workshop participants.

