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A birthday celebration for a man who can’t return home

June 12, 2014 1 comment

[Note: This is one of a number of cases we have reviewed in which the state, courts, and providers have acted to reduce and even eliminate contact by  family members with their loved ones with intellectual disabilities.  We are hopeful that the Patrick administration will change its position in these cases in light of its reversal last week of its position in the high-profile case of Justina Pelletier.  In that case, the administration is now supporting the return of Justina to her parents.  The administration had previously agreed with a judge who had awarded permanent custody of Justina to the state after doctors at Boston Children’s Hospital charged that her parents were having her wrongly treated for an apparent medical condition.]

Andy McDonald celebrated his 47th birthday at Carbone’s Restaurant in Hopkinton this past Friday with his father, Stan, his step-mother, Ellen, three of his childhood friends, a nephew of his, two members of Stan’s jazz band, and a staff member from Andy’s group home.

It was a low-key dinner, but Andy, who has a mild intellectual disability, was clearly having a good time, sitting next to his dad, keeping up a steady stream of chatter, remembering to engage everyone.  He called over to me at regular intervals, “How’re you doing?”  And when I answered fine, he would say “Peace,” and hold up two fingers in the old salute from the 1960s.

“I think he came out (of the womb) talking,” a staff member of his group home said.

It was a happy gathering, but a cloud, as usual, hung over it.  Andy has been prohibited by a court order, his court-appointed guardian, his group home provider, and the state from ever visiting his hometown of Sherborn, even under supervision.  That is where Stan and Ellen still live.

A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan maintains the finding is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor.  He has never been charged with a sexual offense, and clinical records indicate he has not exhibited aggressive behaviors in more than a decade.

Stan is now 78 years old.  At the birthday celebration, Stan looked happy to be sitting beside his son, but tired.  Some people wondered what will happen when Stan and Ellen are no longer able to travel to Andy’s group home.  Since he has been banned for life from going back to his hometown, would Andy no longer be able to see his father and step-mother?

“I don’t think that would make any difference to them,” Stan said, referring to the courts and other decision makers.  Stan has been fighting for years to be Andy’s guardian.  He and his former wife voluntarily relinquished their guardianship in 1986 as part of a settlement of a longstanding custody battle over Andy.

Despite the support of a legislator, many supporters, and even his former wife for Stan’s guardianship bid, there has been no reconsideration by the Department of Developmental Services or the courts of the decision not to appoint him as guardian.  And there has been no reconsideration of the Department’s position that Andy should never be allowed to visit his parents in their home.  Stan can’t afford the legal costs of trying to change the situation.   It was clear that those who make the decisions about Andy do not see him or Stan or Ellen on a regular basis, or have never met them.

When friends arrived at the party on Friday, Andy greeted them with, “You’re lookin’ old.  How old do you think I am?”  At times, Stan would have to slow him down a bit, particularly when Stan was on the phone with Ellen, who had left to try to find Adam, a friend of Andy’s, who had gotten lost driving to Carbone’s.

One of Andy’s favorite things are scratch tickets; so nearly everyone gave tickets to him, tucked into birthday cards, and Andy spent a lot of time, in between eating dinner and later birthday cake, scratching the tickets to see what he might have won.  He ultimately won $19.  Once, many years ago, he explained proudly, he won $2,000 on a ticket.

Even as he celebrated his birthday, Andy showed he has a concern about death, particularly of people close to him or whom he admires. He asked me at one point if I knew the song “Abraham, Martin, and John,” about the assassinations of Abraham Lincoln, Martin Luther King, John F. Kennedy, and Bobby Kennedy.  “They were good people,” he said. “Their passing is sad.”  And he also mentioned the death last week of Ann Davis, the actress from The Brady Bunch.  “It’s sad that she has passed,” he said.  The Brady Bunch is still one of his favorite TV shows, and he broke out at one point into a rendition of the Brady Bunch theme song.

Ellen never got the chance to eat her dinner.  Once she arrived after having located Adam, it was time to bring out the ice-cream and chocolate birthday cake.  She brought the cake to Andy’s table, the candles burning, and everyone singing “Happy Birthday,” as she set the cake in front of Andy and told him to make a wish.

Andy blew out the candles, and said his two wishes out loud.  “I wish for everlasting life,” he said, “and for the chance to one day return to my hometown of Sherborn.”  “God bless you, son,” were Stan’s words to him.

DDS expands privatized services despite family preference for state care

June 9, 2014 4 comments

Patricia Murphy had to file a federal lawsuit in order to get her intellectually disabled sister out of a corporate, provider-operated group home, where she says she was subjected to abuse and inadequate care, and into a state-operated group home.

Murphy’s case illustrates how difficult the Department of Developmental Services has made it for people either waiting for services or receiving inadequate services in privatized group homes to obtain state-run residential placements in Massachusetts.   DDS funds group homes run by both corporate providers and by DDS staff.

At the same time, people living in state-run developmental centers have been given priority in finding state-operated group home placements when the developmental centers have been closed.

Here are some facts to consider:

  • More than 87 percent of the 372 people who have been transferred since 2008 from four developmental centers marked by the administration for closure have gone either to state-operated group homes or to two remaining developmental centers (primarily to the Wrentham Developmental Center). Only 47 people — less than 13 percent of the total — were transferred to corporate, provider-run group homes.  This, to us, indicates, a strong preference among families and guardians for state-run care.
  • As a result of this apparent preference, DDS has built 49 new state-operated group homes since 2008.  But it has closed 28 such residences during that same period, resulting in a net increase in state-operated residences of only 21.
  • There are apparently vacancies in state-operated group homes.  DDS figures show that nearly all of the 99 residents living in the 28 residences that have been closed were moved to other state-operated residences.
  • Yet, DDS is placing a priority on boosting funding and resources not to state-operated care, but to corporate providers, and has either cut funding for state-run care or provided more modest increases for it.  The governor’s proposed Fiscal Year 2015 budget would result in an increase in the provider residential line item of almost 17 percent in inflation-adjusted terms, more than double his proposed 6.5 percent increase in the state-operated residential line item.

The new state-operated group homes built since 2008 appear to have been intended to accommodate only the residents transferred from the developmental centers.  They have apparently not been made available for virtually anyone else. DDS is not only not building new state-operated facilities for persons other than former developmental center residents, it is apparently not letting people other than developmental center residents even know about the existence of state-operated residential care options.

Thousands of disabled individuals are reportedly waiting for residential services in Massachusetts, although the state does not maintain an official waiting list that would publicly identify the number of people of waiting.  Others, such as Patricia Murphy, are apparently trying unsuccessfully to move family members or wards in the DDS system from provider-operated to state-operated care.

The administration’s policies of under-funding state-operated care,  closing existing state-operated group homes, and preventing people from choosing state-operated care as a residential option are combining to reduce the availability of high-quality care throughout the DDS system.  Direct-care workers in state-operated group homes have better training and benefits than workers in the provider-operated system.  That’s why families from the closing developmental centers have chosen state-run facilities for their loved ones.  But the administration appears to be more interested in promoting a privatized, provider-run system than in placing people in settings offering the best care.

According to information from DDS, 157 new provider-run homes have been built since 2008, bringing the number of such homes to more than 1,800 in Massachusetts.  In contrast there are just 261 state-operated group homes in the commonwealth and only two fully functioning developmental centers that are not currently targeted for closure.

DDS has stated that it is currently projecting to build five new state-operated group homes, but it is also projecting to close six of them.  Our question is why.  Why build new state-operated homes and at the same time close existing homes, and moreover, why close these homes while people are waiting for residential placements?

Patricia Murphy’s lawsuit, which was filed last year, alleges that DDS routinely fails to disclose the existence of state-run homes and developmental centers to individuals applying for DDS care, and portrays corporate, provider-run homes as the only option for them.  The plaintiff in the case, Kathleen Murphy, is severely intellectually disabled, and was a resident of a group home operated by a corporate provider to DDS.  (Disclosure: Kathleen Murphy is represented by Thomas Frain, an attorney who is president of COFAR’s Board of Directors.)

“We had been asking DDS since 2006 to get her (Kathleen) into a state-operated group home, and they wouldn’t do it,” Patricia Murphy says.  The federal complaint maintains that Kathleen Murphy suffered severe psychological harm and a risk of death in provider-run group homes.  She was finally moved to a state-operated group home in February, but only after the lawsuit was filed.

According to the complaint, Kathleen was over-medicated in a provider-run residence with Depakote and Risperdal, drugs for bipolar disorder; however, that diagnosis of bipolar disorder later turned out to be mistaken.  The suit alleges that DDS’s failure to move Murphy to a state-run facility coupled with its failure to provide people waiting for DDS care with the option of state-run residential care violate federal laws.  Those laws include the Home and Community Based waiver of the Medicaid Law (42 U.S.C., Section 1396), which requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives”  for care. In addition, the complaint alleges that the state is violating the federal Rehabilitation Act (29 U.S.C.,  Section 794), which states that no disabled person may be excluded or denied benefits from any program receiving federal funding.

DDS’s projected number of transfers to provider residences didn’t materialize

In 2009, DDS projected that a substantial number of former developmental center residents would choose provider-run residential care.  In its Community Services Expansion and Facilities Restructuring Plan in 2009, DDS projected that slightly more than half of a then estimated total of 402 developmental center residents would be transferred to provider-run group homes.  In other words, DDS was projecting a major increase in the number of clients living in provider-run residences — a situation that would result in millions of dollars of additional state revenue to the providers.

As it turned out, the 47 former developmental center residents who actually transferred to provider-run residences was 77 percent fewer than the 206 that DDS had projected.  The number of residents who actually transferred to state-operated group homes (156) was 39 percent higher than what DDS projected in 2009, and the number that transferred to other developmental centers (169) was more than double what DDS originally projected.

In actuality, things didn’t work out the way DDS and the providers had projected or apparently hoped.  Possibly for that reason, it would appear that DDS is continuing to try to maximize the providers’ revenue and business opportunities at the expense of adequate and appropriate care and services for the vulnerable people in the Department’s care.  DDS needs to rethink its policies in this regard.  At the very least, DDS should let people seeking residential care know about existing vacancies in state-operated group homes.  That is after all the law.

 

 

 

Let’s honor Ally, Kim, Allison, and Gail’s choice to stay in their sheltered workshop

May 28, 2014 6 comments

It’s now up to a legislative conference committee to decide whether Ally, Kim, Allison, Gail and many others will continue their longtime participation in sheltered workshops for the intellectually disabled in Massachusetts.

Ally is 24 years old and has Down Syndrome.  She is non-verbal and suffers from anxiety, but excels at routine.   Her tasks and assignments at a workshop in Newburyport provide her with a feeling of satisfaction and importance, and with a paycheck, which she endorses and cashes at a local bank.  She then walks with her mother to a convenience store where she purchases items with her earnings.

Kim, 43, has worked in the same sheltered workshop for 23 years.  She has tried a number of times to work at jobs in the community, but those attempts have all failed for a variety of emotional, social and physical reasons.  However, by choice, she puts in a 30-hour workweek in the sheltered workshop. She lives in her own apartment with support from her parents and other family members, and from people in the community.

Allison is 44 and has been a  client of the workshop for 22 years.  During that time, she has grown in independence, but enjoys being with her peers in an organized, safe environment.   She works a few hours a week at a McDonald’s, but returns to the workshop every day. She is very proud of earning two paychecks.

Gail is 44 and has Down Syndrome.  “I like to get paid to do the work I like to do. I like to work with my friends,” she says of her participation in the workshop.   She lives in an apartment managed by the YWCA in Newburyport, makes her own breakfast and lunch, and takes a bus to the workshop every day.  Doing all of that requires 100 percent of her capability.   Gail has had several part-time jobs in the community, all of which, for a variety of reasons, have ended.  Her workshop job is the primary basis of her self-esteem.

However, the Patrick administration and state-funded, corporate providers believe they know better than these four women and their families what’s best for all of them, and are moving to close the Newburyport workshop and the rest of the sheltered workshops throughout the state.

As we have reported in several blog posts, the administration believes it would be better for Ally, Kim, Allison, Gail, and hundreds of other intellectually disabled persons throughout the state to work in mainstream jobs where they will not be “segregated” from non-disabled peers and will supposedly be able to earn higher wages.  DDS announced that it was no longer allowing new referrals to sheltered workshops in the state as of this past January, and plans to close all remaining workshops as of June 2015.

But the families of workshop participants are fighting back, arguing that appropriate mainstream work opportunities do not exist for their loved ones, and that the sheltered workshops provide what they want and need.  They maintain that when the workshops are gone, the former participants will end up stuck in DDS day programs with little to do and with no wages at all.

In late April, at the urging of families, workshop staff, and advocates, the House of Representatives inserted language in the proposed Fiscal Year 2015 budget to protect the workshops.  The line-item language is intended to prevent the planned closures of sheltered workshops if existing participants choose to remain in them.  The Senate, however, did not adopt the protective language.  As a result, the issue is now set to be decided by a legislative, House-Senate conference committee on the budget.

The Department of Developmental Services and DDS’s corporate providers are apparently already moving to head off the possibility that the conference committee will adopt the protective language in the House version of the budget.   We understand that late last week, Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), held a meeting with administrators and staff and some parents in one sheltered workshop, and offered a vague promise to schedule another meeting with DDS to discuss keeping some of the workshops open on a limited basis.

Vague promises do not and should not take the place of clear and needed statutory language.  We hope that the message gets communicated to the conference committee, which is set to begin deliberations on the budget on June 4, that such promises will not suffice.  The protective language in the House budget should be adopted by the conference committee.

In coming weeks, we hope all six members of the conference committee will come to understand what participating in their sheltered workshops has meant for Ally, Kim, Allison, Gail and for so many others.

 

 

 

 

Setting the record straight yet again about the Fernald Developmental Center

May 21, 2014 3 comments

Every year at budget time, the corporate providers funded by the Department of Developmental Services trot out the Fernald Developmental Center and the families that have appealed the transfers of their loved ones from the center as an example of an egregious waste of taxpayer dollars.

As today’s story in The Boston Herald demonstrates, this year is no exception.  There are six or so residents left at the facility, which was targeted for closure by the Patrick administration in July 2010.  But because those residents’ appeals are still pending in court or have only recently been decided, Fernald has remained open and is now costing $11 million a year to continue to operate.  Ergo, the guardians and advocates of these residents have conspired in an evil plot to force the state to continue to pay to run this huge and unnecessary institution.

The problem with this argument is it’s not true.  The reason it costs so much per resident right now to operate Fernald is because the administration never properly downsized the center as the population there was reduced.  Admittedly, this would have taken some planning and possibly the construction on the campus of group homes for the remaining residents, which could have been operated cost-effectively.

The Fernald guardians and advocates had long proposed what we considered to be a win-win approach for both the residents and taxpayers, which would have allowed for the continued operation of Fernald and other developmental centers in Massachusetts that provide intensive, federally regulated care for some of the state’s most profoundly, intellectually disabled and medically involved residents.  The Fernald proposal included both the downsizing of the facility and a “postage-stamp” arrangement under which the remaining Fernald residents would continue to occupy a small portion of the existing campus while the rest of the campus was opened up to other uses or development.

The administration, however, refused to discuss or even consider anything other than closing Fernald entirely and moving the residents to other locations around the state.   About 14 Fernald guardians and family members exercised their legal right to appeal the decision to move their loved ones, many of whom had spent close to their whole lives at Fernald and had benefited greatly from the expert care there.

Yesterday afternoon, I got a call from a Boston Herald reporter, who was dutifully writing up a story about this outrageous situation at the behest of DDS, the Arc of Massachusetts and the Association of Developmental Disabilities Providers (ADDP).  These three organizations bring up the Fernald situation every year to lawmakers and the media in order to make the case that more state funding should go to DDS corporate providers and less to state-run programs such as the remaining developmental centers and state-operated group homes.

The Herald reporter first asked whether COFAR was supporting or working with the remaining Fernald residents.  I said that we haven’t been actively involved in advocating for Fernald for several years because the closure has been in litigation, but that we believe the Fernald guardians have exercised their legal right to appeal the transfers of their wards.  I stressed that while the cost per resident at Fernald might be very high right now, those guardians should not be blamed for it because it is the administration that never considered proposals described above to downsize Fernald and operate it cost-effectively. I also said it is incorrect to consider that closing Fernald will eliminate all costs of caring for these people. It will still be expensive to care for those residents in the community, I said, adding that no one knows the real cost because no one has ever done an independent study on it.

I added that the administration never agreed even to negotiate the downsizing and postage-stamp proposals.  I also provided the reporter with information about a key cost of DDS care that has not been counted in the developmental center closures: the cost of salaries of the executives running the hundreds of corporate provider agencies that contract with DDS.  We have looked at the tax records of more than 250 of these contractors and found that the cost of paying their CEOs, executive directors, and other executives runs to between $80 million and $90 million a year. That’s where the waste of our taxpayer dollars really is.

I wasn’t surprised to see that very little of what I said made it into the actual story, which also made it sound as though COFAR is still actively involved in the fight to save Fernald.  The story did accurately quote me as saying the state has mismanaged Fernald and could downsize it; but beyond that no mention was made in the article of the postage-stamp proposal and the administration’s failure to consider it, or of the lack of an independent study on the cost of care in the community system.  And there was no mention of the provider executive salary issue.

The story, however, does include a quote from Leo Sarkissian, executive director of the Arc, about how “outrageous” it is to be “spending that amount of money (on Fernald) when there’s the existence of very good options for each of the people living there.”  In other words, let’s blame the families for this.  And there’s a quote from Gary Blumenthal, president of the ADDP, who termed Fernald “almost a ghost town” — a phrase that provides no valid insight into the situation at Fernald, but predictably made it into the headline of the Herald story.

Sarkissian is also quoted as saying, “Let’s move on. We have so many other important things that are issues.”  To that, I’d just ask, who is it who keeps bringing this particular issue up each year?

 

Arc, ADDP, DDS putting out misleading information about sheltered workshops

May 19, 2014 1 comment

It seems the Department of Developmental Services and their corporate provider allies are spreading misleading and at times false information about sheltered workshops in their joint effort to close them throughout the state.

The battle over the workshops is now in the state Senate, which is considering budget amendments to prevent the administration from carrying out its plans to close all remaining workshops in the state by June 2015.  As we have reported, the administration considers these popular programs politically incorrect because they allegedly group intellectually disabled people together to do assembly and other types of work, and thereby “segregate” them from their non-disabled peers.

In an email sent to members and advocates on Friday, Leo Sarkissian, executive director of the  Arc of Massachusetts, maintained that sheltered workshops “do not allow for community inclusion.”

That’s just not true.  As an administrator of one sheltered workshop explained, non-disabled persons work alongside disabled individuals in that DDS-funded facility, and several disabled clients are taken into the community regularly to make deliveries and for other purposes.  “Our building …looks and feels like any other business in our community,” the administrator said.

Meanwhile, DDS and the Association of Developmental Disabilities Providers (ADDP) are misrepresenting the position of the federal government, particularly the Justice Department’s Civil Rights Division, regarding sheltered workshops.  Contrary to what DDS and the ADDP are saying, the DOJ is not requiring states to close the workshops.  That is what the ADDP contends, however, on its website and emails it is sending out.

In addition, a DDS PowerPoint used in “family forums” earlier this year stated that DOJ legal actions in Oregon and Rhode Island found that sheltered workshops “violate the ADA (Americans with Disabilities) Act and the Olmstead Supreme Court decision.”  But that’s not true either.  A DOJ letter sent in January to Rhode Island state officials makes it clear that while the Obama administration doesn’t like sheltered workshops, the Department does not consider that the workshops violate the law.  The letter notes, for instance, that:

While sheltered workshops and facility-based day programs may be permissible placements for some individuals with I/DD (intellectual and developmental disabilities) who make an informed choice to rely on them, the State of Rhode Island has unnecessarily and unjustifiably over-relied on such programs to the exclusion of integrated alternatives like supported employment and integrated day services (our emphasis).

The DOJ letter goes on to state that sheltered workshops in Rhode Island do not have to close if people choose to remain in them.  Yet, the Patrick administration is mischaracterizing the DOJ position as requiring it to close all remaining workshops in Massachusetts.  The administration must be worried that there is a chance of passage of language in the Fiscal Year 2015 state budget that would ensure that sheltered workshops remain open for those who choose to stay in them.

The effort to close the workshops is being driven by an extreme anti-congregate care ideology that the Patrick administration subscribes to.  Simply because a group of disabled people work together in sheltered workshops, the administration considers it to be a “segregated setting.”

If that’s the case, though, what does the administration think about the Gateway Arts program in Brookline, which provides art studio space and “professional development for more than 100 adults with disabilities who have talent in fine hand crafts and fine art?”

Even if it’s not technically a sheltered workshop, the Gateway Arts facility (as shown in the website photo below) would appear to be in violation of federal regulations, as far as the Patrick administration is concerned, because there are more than 100 disabled artists there. That would seem to make it even more of a congregate facility than a sheltered workshop with 20 or so disabled people and non-disabled people in it.

Please call your senator and ask him or her to support budget amendments 875 and 946, which state that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”  Also, please ask them to support amendment 176, which would strike the words “closure of sheltered workshops” from a budget line item that funds the transition of people from sheltered workshops into provider-run day programs.

 

State-funded provider execs paid more than $80m a year

February 7, 2014 Leave a comment

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).

Father frustrated for years in gaining guardianship of his intellectually disabled son

January 14, 2014 1 comment

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, Andy, and Ellen McDonald on an outing from Andy's group home in 2012.

Stan, Andy, and Ellen McDonald on an outing from Andy’s group home in 2012.

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.

Questions surround care of Sara Duzan in group home

December 23, 2013 13 comments

Sara Duzan has been placed in physical restraints in a group home 37 times since she was moved there on July 24, and the restraints continued through the month of November, according to staff records provided to the Duzan family.

A “baseline behavioral data” report on Sara’s care, dated December 11, states that there were 7 restraints imposed on Sara over a 7-day period in July; 10 restraints in August; 5 in September; 7 in October; and 8 in November.  The report also indicates that behavioral episodes leading to the seclusion of Sara in her room in the Westminster residence also continued to take place each month.  There were 7 such episodes in July; 16 in August; 9 in September, 15 in October, and 12 in November.

The report of the clinical staff at the state-funded Becket Family of Services residence appears to raise questions as to whether Sara has made progress since she was placed there on July 24.  Since then, contact with her family was sharply restricted and then cut off entirely by the provider and her current guardian.  The Duzan family, who lost their guardianship of Sara in 2009, is fighting to regain their guardianship and to bring her back to their home.

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

Sara’s bedroom in her family home in Westwood, where she lived for over 18 years of her life.  She was at home until 2008, and later from November 2011 until January 2013. In her current group residence run by Becket Family of Services, she is living in a room with only a bed, box-spring, and some personal items. She destroyed many of the other furnishings in the room in what her mother believes have been repeated attempts to escape.

In a report filed December 13 with the Norfolk County Probate Court, Sara’s current guardian, Lynne Turner, contended that Sara was improving at the Becket residence and her behavior was becoming “calmer and less agitated.”  But that assessment seems to be at odds with the staff report showing that episodes leading to restraints and seclusion have been continuing.

Sara has a rare genetic disorder called Smith-Magenis Syndrome (SMS), which is characterized by behavioral outbursts and intellectual disability.  Parents of children with SMS from around the world have commented on this blogsite that using restraints to control behavioral outbursts of persons with SMS is counter-productive and usually makes the behaviors worse.

Court-appointed guardian has not visited the residence

Turner indicated in her report to the court that she has never visited Sara in the Becket residence where Sara has lived since July.  Turner stated that she intended to visit her on one occasion but was ill, and that she planned a visit “within the next few weeks.”  Turner also stated in the report that Sara was not taking any ant-psychotic medications.  Yet the staff records indicate that Sara has been taking anti-psychotic or psychotropic medications, noting that she had refused them on 14 occasions since July.

Questions linger over cut-off of family contact

The latest records also appear to raise questions about the reasons given for the complete cutoff in family communication and contact with Sara.

Turner stated in her report to the court that family communication with Sara had been terminated because Sara became so agitated after calls from the family members she acted out and had to be restrained “on more than one occasion.”  It was determined, Turner wrote, that Sara’s reaction to family phone calls caused a safety problem to Sara and staff.  Turner added that “parental contact refers to visits, phone calls, gifts, and any other attempt to contact Sara.”  The family was therefore not even permitted to send Christmas gifts to Sara this month.

A staff clinician’s report, however, indicated only one instance in which Sara allegedly became violent after a family call; and that clinician’s assessment that Sara was acting violently at that time appears to be contradicted by a statement in a police report that Sara appeared shy and timid.

Robin Thompson, a Becket clinician, stated that following a call with her parents on November 19, Sara “exhibited violent behavior over a span of hours” and had to be restrained.  Thompson stated that no further calls from the family have been permitted since that incident, at her recommendation.

A phone call with Sara’s father, however, appears to have taken place on November 18, the day prior to the date noted by Thompson, according to a Westminster Police report.   According to the police report, Sara told her father she had been hit in the mouth by a staff member, and the family then called police to the house.  The police report stated that when the officers arrived, Sara was “shy and was hanging on with a friend,” another client.  The report indicated that the police were not able to establish that Sara was assaulted by anyone on the staff, although she did have small scabs on her lip and toe.

According to the police report of the incident, Sara said she had been hurt about a week previously after the staff had broken down the door to the bathroom.  Another client told police Sara had locked herself in the bathroom and was threatening at the time to jump out the window.

Thompson’s clinical report stated that in calls to her mother and father, “Sara focuses on the negative.”  Thompson speculated  that Sara was “conditioned” to do this because she has stated that “ if she is ‘bad’ she can tell her family and she can go home because ‘Becket won’t keep me.’”  As a result,  Becket initially set rules that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her.  All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end.   Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints.

In her report to the court, Turner maintained that it was Sara’s parents who were failing to abide by the telephone call “protocol,” and that this was causing Sara to become agitated.

Maryann Duzan, Sara’s mother, denied that the family’s phone calls with Sara were causing her to become agitated.  She said she believes the cause of Sara’s agitation has been her “imprisonment” in the Becket residence, and possible abuse that she has suffered there.  She said the phone calls were discontinued because Sara had made statements during the calls about being assaulted, restrained, and living in poor conditions.   In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.

Lack of a transition before placement in program

It appears that Sara was placed by Turner in the Becket residence without an adequate transition period, which Maryann maintains should have involved her family.  The sudden placement appears to have resulted in a violent episode of self harm and property destruction on Sara’s second day in the residence that necessitated a call by the staff to the police.

In her clinician’s report, Thompson described the episode on Sara’s second day at Becket, saying Sara barricaded herself in the room, ripped out the light fixtures, and attempted to electrocute herself.

Maryann Duzan maintains that Sara was “dumped” at the Becket residence with no advance notice to her on her 22nd birthday.  “She thought she was coming home for good on her birthday,” Maryann said. “They didn’t tell her she was going there (to the Becket residence), nor were we allowed to talk to her.”  Since then, Maryann said, the family’s requests to visit Sara on Mother’s Day, Father’s Day, and her birthday have all been denied.

Maryann also said most of the furnishings in Sara’s room in the Becket residence have been removed.  A report filed by the police in September stated that Sara’s room consisted of a “bed and box-spring and linens and a few personal items.”  Maryann maintains that Sara had “destroyed other furniture in the room as she has fought to get out of this imprisonment.”

Since July, Thompson said, “Sara has exhibited some progress,” including some success in community outings, and widening her choice of foods; but her assessment appeared to stop short of Turner’s more positive assessment that “Sara’s behavior is becoming more appropriate and less assaultive.”

Thompson stated in her report that Sara engaged in “severe self harm” and property damage after a dental visit on Sept. 11.  That episode does not appear to have been related to contact with her family.

Community outings

The Becket baseline behavioral data report indicates that Sara earned 10 weekly outings from the Becket residence due to good behavior since July.  According to Thompson’s clinical report, the outings have consisted of Sara’s being taken to a Burger King drive-thru; “short hikes in a local park”; a visit to “Michelle’s” in November to purchase items that were pre-ordered; and a visit to a mall in December and to a drive-through at a Dunkin’ Donuts.  She had been “successful in all community outings,” the report noted.

Maryann Duzan maintained that the community outings described by Thompson appear much more restricted than the access Sara had in the community when she lived at home. Sara had volunteered at Animal Rescue League of Boston from 2004 to 2006, and never had any behavioral problems there, according to a letter of reference from the organization.  She also participated in a special needs religious education program at St. Catherine’s Catholic Church in Norwood.  Maryann said Sara also enjoyed volunteering with her at Rosie’s Place in Boston and serving dinner to abused and homeless women there.  “Now (as a resident of the Becket residence) she gets to drive through a Burger King,” Maryann contended.

Turner’s guardianship report stated under the heading “future arrangements,” that over the next 18 months, “Sara will continue to settle in the program and expand her ability to access the advantages this program can provide her.”  Nothing is stated in the report about restoring family contact with Sara. Yet, Sara’s separate individual care plan at Becket, dated July 24 and revised September 18, states that restrictions on family contact were not meant to last for more than three months.

Despite the negative assessment of the family’s impact on Sara held by Turner and Thompson, Ronald Ebert, a psychologist hired to evaluate Sara earlier this year, described the family as “concerned and active”; and Gail Quinn, Deputy General Counsel for the Disabled Persons Protection Commission, reportedly stated that she believed the Duzans to be “caring and loving parents who are very involved in their daughter’s life in order to provide her the best.”  Even though he ruled the family as unfit to be guardians to Sara because they allegedly did not cooperate with certain providers, Probate Court Judge George Phelan stated in 2010 that the family had an “undeniable love” for Sara.  Phalen concluded that “it would be inappropriate for the Court to exclude them completely in decisions affecting Sara.”

Guardian removed Sara’s mother as Social Security rep. payee

Turner stated in her guardianship report that she had terminated Maryann Duzan, Sara’s mother, as Sara’s Social Security representative payee in October  because Duzan allegedly never provided an accounting to the court or to Turner of Sara’s funds, and because she allegedly refused to compensate a former residential provider and a Friendly’s restaurant in Hyannis for damage Sara caused to property there while on a community outing.  Turner said she has applied to become Sara’s representative payee.

Maryann Duzan responded that she did pay the Friendly’s restaurant $275 in compensation for the damage.  She said she filed accountings of Sara’s funds with the Social Security Administration, and was told she did not have to file similar accountings with the probate court because she was not appointed as a conservator for Sara.

We would question whether the Duzans should have been required to compensate the former provider and the restaurant for damage since all family members had been removed as Sara’s guardians and had no control over her by that time.

COFAR is continuing to advocate for Sara’s immediate return to her family.  We urge readers to sign COFAR’s petition on change.org, asking Governor Deval Patrick and Department of Developmental Services Commissioner Elin Howe to allow Sara to return home to her family immediately.

Family is shut out of contact with special needs daughter

December 6, 2013 48 comments

Maryann Duzan and other members of her family lost their guardianship of Maryann’s intellectually disabled daughter, Sara, in 2009, based on an admission by Maryann that she once slapped her daughter on the cheek, and the apparent perception that the family has been too aggressive in advocating for her.

As a result, a series of increasingly restrictive limits has been placed by court-appointed guardians and residential providers on family communication with Sara.  Since June, the family has not been allowed to see Sara, who is currently living in a group residence in Westminster, MA, run by a state-funded, corporate provider.

As of late November, the family was prohibited even from talking with Sara over the phone.  The family is afraid she is being subjected to what they consider abusive “restraints” by the group residence staff, but they have no way of determining what is actually going on.

Maryann contends her daughter, who is now 22, has been kept a virtual prisoner in the residence run by Becket Family of Services since late July.  Sara has a condition known as Smith Magenis Syndrome, a genetic disorder characterized by intellectual disability and behavioral outbursts. The family maintains that the use of restraints to control those behaviors actually makes them worse.

According to the family, the restrictions on their contact with Sara and the removal of their guardianship occurred because they called attention to what they termed abusive restraints placed on Sara in previous residential programs in Northfield, NH, and New Marlborough, MA. Their claims about the New Hampshire facility, the Spaulding Youth Center, were corroborated by an attorney for the federally funded Disabilities Rights Center in that state, who found that Sara was repeatedly restrained by staff in the facility between 2008 and 2010.

According to Aaron Ginsberg, the DRC attorney, Sara was often restrained at the Spaulding Youth Center while naked or partially clothed for hours at a time, and male staff were often involved. She frequently suffered bruises and other injuries from what are known as prone restraints, and was subjected to hours of enforced seclusion, Ginsberg stated in an internal DRC memo. In addition, staff at the facility joked about Sara and other residents of the facility on Facebook, Ginsberg wrote.

Sara Duzan (fourth from left) celebrates her birthday with her family in ...  Pictured are (from left)..., her mother Maryann, grandmother...., brother David, father Paul, and ...

Sara Duzan (fourth from left) celebrates a birthday for her grandmother with her family.  Pictured are (from left) Erin Hachey,  Sara’s sister; Maryann, her mother; Virginia Herrity, her grandmother; Sara; David, her brother; Paul, her father; and Tyler, her nephew.  The family has not seen Sara since June and is currently not permitted even to communicate with her by phone.

Ginsberg further noted in the memo, dated November 8, 2010, that Sara’s behavioral outbursts appeared to be largely in response to physical restraints or the threat of their use from the staff at Spaulding.  In his memo, Ginsberg stated: “In most incidents, Sara would not become aggressive until staff approached her or became physical with her.”  Her family believes her aggressiveness in those situations was an attempt to protect herself.

A full investigation of Ginsberg’s findings was apparently never done by the DRC, however.  Now, the family is concerned staff in Sara’s current residence run by Becket Family of Services are once again using excessive restraints on her.

The use of restraints to control behavior has become increasingly controversial.  In an online paper written for the Minnesota Governor’s Council on Developmental Disabilities, attorney David Ferleger maintained that there “is a proven risk of death and other injuries” from the use of restraints, and that “programmatic and planned restraint is not therapeutic or educational.”   He noted that prone restraints involve “the prone positioning of a patient, following which their wrists are secured behind their back, their ankles are tied, and their wrists and ankles are subsequently secured together by pulling the shoulders back and bending the legs towards them.” In a series of 214 cases of people subjected to prone restraints while in agitated delirium, death occurred in nearly 12 percent of the cases, Ferleger stated. Ferleger contended that only vertical person-to-person restraints should be allowed, and only for “a very limited time.”

Excessive restraints as well as communication and visitation restrictions could violate Massachusetts state regulations that require that people with intellectual disabilities receive humane and adequate care and treatment as well as the “least restrictive” level of care, and that they have the right to be visited.  There may be violations as well of regulations governing the use of restraints.

For the Duzan family, all communication with Sara was cut off on November 26, two days before Thanksgiving, when Maryann received an email from attorney Lynn Turner, Sara’s current guardian, announcing that all further contact either by phone or in person was being “suspended indefinitely” and that the police would be called if anyone from the family or “an agent of the family” attempted “to come onto the program,” meaning the Becket Family of Services residence. Turner stated that this cutoff in contact was being instituted “as per agreement between the program staff and me.”

A few months earlier, a document provided to the Duzan family from Sara’s current residential program stated that the family would be allowed to make one 15-minute call a week to Sara, and that no one was allowed to discuss visits home or whether Sara was unhappy at the facility or its treatment of her.  All calls were to be monitored by staff, and the family was to give a two-minute warning to Sara after 13 minutes that the call was coming to an end.   Sara was specifically prohibited from talking to her family about any “dislikes about staff, residence, Becket,” or about restraints. 

Maryann contends the family was allowed seven phone calls with Sara since the end of July, and during five of these phone calls, Sara made statements about being assaulted, punched, restrained and living in poor conditions.   In those instances, Maryann said, the phone was disconnected shortly after Sara began making those claims.

Similar restrictions on family contact were imposed while Sara was at the Spaulding facility.  The latest restrictions on family contact were put into effect despite the fact that a probate court judge in 2010 described the family’s “undeniable love” for Sara.  The family’s apparent problem, as characterized by Norfolk County Probate Judge George Phelan, was that the family as a whole was uncooperative with providers and appointed guardians, and felt “only they know what’s best for Sara.”  Phelan termed the family “ill-suited” for guardianship and “inartful.”

Colleen Lutkevich, COFAR Executive Director, maintains that the Duzan case illustrates the danger a family can face in caring for a disabled loved one if they lose guardianship of the person.  Not only has the Duzan family lost all contact with their daughter, but they say they have spent their life savings on legal costs in their so-far unsuccessful effort to regain their guardianship.  Their legal battle has been a byzantine one that has involved a succession of guardians and even a Special Master in July who is supposed to resolve disputes between the family and Sara’s current guardian.  During this time, the state has paid at least three attorneys to fight the family efforts to regain guardianship, Maryann said.

Andrea Barnes, the Special Master, wrote in July to Maryann that she agreed that “it is important for Sara to know that contact with her family will be a normal part of her life…”  But it does not appear that Barnes has acted on the family’s behalf to restore that family contact. Maryann wrote to Barnes on November 24 to ask her to get Sara out of the current residence because she thought she was being harmed there, but Barnes responded the next day that she had no reason to believe Sara was being harmed.  Barnes promised only that she would visit the residence to check on Sara “sometime in the next few weeks, and will certainly let you know if I have concerns.”

Maryann Duzan and other family members initially gave up their guardianship of Sara in the wake of a December 2009 investigation by the Massachusetts Disabled Persons Protection Commission (DPPC) into allegations of abuse of Sara against the Duzans themselves, including an admitted instance in which Maryann slapped Sara on the cheek.  Maryann contends Sara was browbeaten by the Spaulding staff to implicate her family in abuse.

Maryann said she slapped Sara on one occasion because Sara was acting aggressively while at home and was threatening to throw a radio at her.  She said Sara was acting out because she was due to be returned to Spaulding the next day following a weekend visit home.  Maryann said Sara did not want to go back to the New Hampshire facility because she was being physically abused there, but did not communicate that verbally to her family at the time.

The eventual DPPC report noted that aside from the slap by Maryann, the allegations of beatings of Sara by one or more members of the family were all the result of a statement given on one occasion by Sara to staff at Spaulding.  The report concluded that the DPPC could not substantiate the allegations of abuse other than the slap by Maryann, and that Sara had never spoken negatively of any of her family members until the single occasion on Sept. 1, 2009. 

While the abuse allegations against the family were under investigation, Maryann and her husband, Paul, agreed on the advice of their then attorney to temporarily relinquish their guardianship of Sara.  The DPPC then filed numerous motions for co-guardianship arrangements in probate court that would limit the family’s involvement with their daughter. In October 2010, Judge Phelan ruled that none of the family members were suitable to be either guardians or co-guardians, and that Daniel Smith, the executive director of the Arc of Greater Fall River, should be Sara’s sole guardian.  Phelan noted in his ruling that Smith had served as guardian for 24 other persons.

The major concern Phelan raised in his ruling regarding the family was not any alleged abuse by Maryann or other family members, but the difficulty that provider staff, guardians, attorneys and others allegedly had in dealing with the family as a whole.  But despite the judge’s criticism of the family for acting as if they knew best about Sara’s treatment, the federal Developmental Disabilities Assistance and Bill of Rights Act states that families shall be the “primary decision-makers” in the care of their loved ones with developmental disabilities.

Meanwhile, in September 2009, allegations of excessive restraints used by Spaulding were reported by the Duzans to the Massachusetts DPPC.   Maryann contends the family has tried for four years to report abuse and neglect of their daughter to the state.  She says she sent graphic photos of injuries of Sara while at Spaulding to the DPPC’s deputy general counsel.

But, unlike the attorney for the New Hampshire DRC, no one from the Massachusetts DPPC investigated the family’s claims of abuse at Spaulding, Maryann and other family members maintain.  “They (the DPPC) have made it clear they simply don’t care (about the alleged abuse of Sara by Spaulding staff),” Maryann’s son David, who was temporarily a co-guardian of Sara, stated in a detailed timeline that he wrote about Sara’s treatment from 2006 through 2010.

In June 2011, the Duzans’ new attorney, Michael Turner, alleged the use of excessive restraints on Sara at the Kolbourne School in New Marlborough, MA, where Sara was sent after Spaulding. Turner’s motion alleged that Smith did nothing about either the alleged abuse at Kolbourne or the previous alleged abuse at Spaulding, and that Smith cut off the family’s contact with Sara while she was at Kolbourne. Turner then proposed his wife, Lynne, as Sara’s new guardian.  The family wanted other “options” for guardianship examined, but that apparently never happened.

In December 2011, Smith stepped down as Sara’s guardian and the Duzans agreed on Turner’s advice to accept Lynne Turner as Sara’s sole guardian and to sign a stipulation in probate court that they would never sue the DPPC, DDS, Smith, or their previous state-appointed attorney, George Marlette.  They further agreed to sign a stipulation that no family member would even apply for guardianship of Sara for five years.  Maryann said the family felt forced into signing the agreement to hold the parties harmless out of a fear that the family would never see Sara again otherwise.  To avoid the appearance of a conflict of interest, Michael Turner stepped down at that point as the family’s attorney.

Today, the family considers Lynn Turner to be acting contrary to their and Sara’s best interests because she has upheld the Becket program’s restrictions on their communication with Sara. Once again, the family is unable to contact Sara, despite the assessment by a probate judge that they are a loving family to her.  And once again, they fear Sara is being subjected to abusive restraints.

“All we want is Sara safely back home, never to be hurt again, and state agencies to stop retaliating against our family,” Maryann says.

We share the Duzans’ concerns about the situation Sara may be facing in her current residence. We hope the probate court will act quickly to return her to her home.  We urge people to call their legislators to ask for their help in getting Sara back home.  And we think this case merits an independent legislative investigation of all of its aspects.

The phone numbers for the Legislature’s Children, Families, and Persons with Disabilities Committee are (617) 722-1572 (Senate staff), and (617) 722-2011 (House staff).  You can email the co-chairs of the Committee:  Senator Michael Barrett at Mike.Barrett@masenate.gov and Representative Kay Khan at Kay.Khan@mahouse.gov.

In addition, you can contact: Governor Patrick constituent services at constituent.services@state.ma.us; DDS Commissioner Elin Howe at elin.howe@state.ma.us; and Attorney General Martha Coakley at ago@state.ma.us.

 

A ‘thank you’ from Patrick Costa

December 5, 2013 4 comments

A funeral mass was held November 26  for Patrick Costa, a longtime resident of the Fernald Developmental Center, who died on November 19 at the age of 49.  Below is a letter written in Patrick’s voice by his guardian, Ann Witham, who read it at the mass for Patrick.  Ann is a former Fernald employee who agreed to be Patrick’s guardian after his mother died.  She also managed the Fernald chapel for the Rev. Bill Leonard, who has been the pastor at St. Jude Parish in Waltham in addition to his Fernald Chaplin duties.

My Dear Family and Friends,

During my time on earth, I could not talk; I never learned how to read or write or spell; or how to type or use a computer.  But my life has changed.  I’m with God now and as long as He’s ok with it, I can do almost anything, including writing this thank you letter.

The first thing I want to say is a big thank you to all the folks at Fernald for caring for me for almost forty years.  They gave me the best they could and I am truly grateful for their efforts.  It was not easy for me to leave that home, but in the end, it turned out to be a very good thing for me.  When the time came for me to move here to the Wrentham Developmental Center, you went to a lot of trouble to make sure that Heffron “B” was really ready for my friends and me.  You even took extra time to fix the few little things that somehow got overlooked the first time around.

Patrick Costa

Patrick Costa

My friends and I were warmly welcomed into our new home.  It seemed as though everyone involved in our care – from direct care staff to clinicians and everyone in between, took the time to get to know each of us as individuals and to learn first-hand what each of us liked and disliked.  You saw abilities and possibilities, not just disabilities; potential, not just limitations.

You found out that I liked to walk and made sure that I got to join a walking program and participate in Special Olympics where I won a medal.  How proud and happy that made me feel!  I really liked that special green suit I wore for the occasion and showing off the medal to my friends.  I enjoyed going to the pool and you made sure that I had enough swimming trunks for these outings. I am so grateful for your supporting me in all my athletic endeavors, and for finding alternative activities when exercise was no longer possible for me.

Thank you for taking the time to make sure I ate my meals slowly so I would not choke.  Sometimes it was a real challenge just to be sure I chewed before I swallowed, or, to make sure I did not snitch something from another’s plate.  I must admit though, I did manage to succeed a couple of times and thoroughly enjoyed it.

You learned to read the visual ways and sounds I used to tell you what I wanted or what was wrong.  Somehow, you knew that when there was a lot of commotion in the apartment, I would need to “get away from it all;” and spend some quiet time in my room.  You even made sure that I had a special chair to use for relaxation.

Going to Adult Ed was a favorite activity for me.  I was thrilled when I could sign a card with assistance.  When I could no longer get to the program, you made it happen right in my apartment.  That’s what the world would call “really great customer service.”

Van trips were also very special to me.  I especially liked going to the restaurants that went the extra mile and texturized our food so we could eat our meals there.  Thank you for taking the time to plan and organize those special “nights on the town.”

To all who stayed with me while I was in the hospital and at The May Center and back at my apartment, I owe so much.  Your presence gave me more comfort than I can tell.  It was wonderful to wake up and see a familiar face there with me and to hear your voices reassuring me that all was well.  You knew the severity of my condition, but never let it discourage you from being upbeat with me.  Special thanks go to Keith, my long-time friend and companion.  During the last days of my life, Keith watched out for me, protecting me from “strangers” he did not know, keeping things where he thought they should be and making sure staff was always paying attention to me.   A special thank you to new friends from Steward Hospice.  Their care, compassion and concern for me as a person went far beyond what I expected.   Even Keith could not prevent their welcomed presence in my life during my final days.

Mark, I know distance and family matters made it very difficult for you and Beth to travel to visit.  I know you were in constant contact throughout the years, and that the distance did not separate me from your thoughts and affection.   I tried so hard to wait for you, but Jesus came to bring me to my forever home and I had to go with him.  Please take care of yourself.  Your wife and your children need you.

I owe a very special debt of gratitude to Jim Devin for bringing Ann, and sometimes Marilyn, to visit with me.  Jim and Ann, I knew you were both there shortly before I died, and I felt your love and took it with me when Jesus came to bring me home.  And, last but not least, thank you to Father Bill for coming here on his day off to lead you all in prayer.  Father Bill, I’m going to ask God to bless your ministry and to let you have calm seas, fair skies and a string of “keepers” for all the coming fishing seasons.

My friends, I hope you do not grieve too long for me.  My spirit lives on and is oh so happy now with Jesus and my mother and all my friends and relatives who went before me.  I will never forget you and will always pray for you.  I pray God will wipe the tears from your eyes and hearts and that his peace will console, bless and always be with each of you.

With much love and gratitude,

Patrick

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