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State Department denies passport for Mexico trip for developmentally disabled man

May 8, 2017 1 comment

The State Department has denied a passport to a developmentally disabled and mentally ill man who had been planning to travel alone to Cancun later this month to meet a person or persons whom he had met online while playing a video game.

Kris Myerson, the mother of the 30-year-old man, whose name we are withholding, said her family was informed in late April by the Department of Mental Health in an email that her son’s passport application had been denied.

The passport denial effectively prevents the man’s trip, which in his family’s opinion would have been unsafe for him to make alone due to his developmental disability and serious mental illness.

The DMH email, dated April 24, stated that the State Department had denied the man’s passport application “on the basis that additional information was required.”

The email added that it was reported to DMH that the man was no longer interested in pursuing the passport “as the requested information was going to be difficult to obtain.” The email did not indicate what the additional information was that the State Department was seeking.

Myerson’s son has both autism and schizophrenia and is a client of both DMH and the Department of Developmental Services. He currently resides in a group home operated by ServiceNet, a provider funded by DMH.

COFAR has reported that Myerson was afraid her son could have been harmed in Mexico. He weighs about 123 pounds and is 5′ 11” and is emaciated, she said. At the very least, she feared he would get lost there.

In the past eight months, Myerson said, her son has been hospitalized for overdosing on Advil and for self-starvation and dehydration while in ServiceNet’s care. He is also on probation for having bitten an officer’s finger a number of years ago while being taken in for a mental health evaluation; but that probation is scheduled to end next week, prior to his formerly planned trip to Mexico.

Myerson said she is relieved that her son will not be traveling to Mexico although she noted that her son’s planned trip was not cancelled due to any initiative of either DMH or DDS. She added that her son remains under the residential care of ServiceNet, which assisted him in applying for the passport.

Lately, Myerson said, the family has been assured by the DMH commissioner’s office that the department “will be prioritizing her son’s safety through the transition from probation and into the future.”

Myerson further stated that DMH officials recently told her and her family that the department was working with DDS to improve their assessment of clients with “co-morbid autism and serious mental illness.”  She said DMH is aware that such individuals are often not properly assessed by evaluators and staff who have not been trained in autism spectrum disorders.

Myerson applied in 2014 to be her son’s guardian, but was unsuccessful because her son reportedly contested her application and because DMH sided with her son and against her bid for guardianship.

She and her family continue to have serious concerns with DMH and DDS and their role in monitoring and properly assessing her son’s abilities and safety. A DDS official, in fact, told Myerson late last month that her son had been found competent to make his own decisions about travel.

In an April 21 email to Myerson’s daughter, a DDS official stated that it was his understanding that Myerson’s son “has been evaluated several times in recent years and found to be a person who is competent to make his own decisions.  As such,” the email stated, “(Myerson’s son) has the right to decide such things as where he will live, where he will travel, etc. DDS is not an agency that can restrict a competent person’s choices in these areas.”

Myerson’s daughter maintained, however, that DDS had not evaluated her brother’s functioning level. She said that as a former client of Vermont Developmental Disability Services, her brother had had a court-ordered guardianship assessment by a professional evaluator “and was judged to be in need of a guardian at that time, based on his very low scores.” That was before he was relocated to Massachusetts.

Myerson said that persons with autism often use “scripted dialogue” that they acquire from movies or even from therapists themselves. That ability to memorize that dialogue without really understanding it can make those individuals appear highly intelligent and insightful and can even fool mental health professionals who do not have deep knowledge of Asperger’s and other autism-related conditions.

The use of such scripted dialogue is one means by which some persons with autism attempt to hide their condition from others — a process sometimes referred to as “camouflaging.”

Myerson noted that her son “has many ‘savant’ skills” such as high-level vocabulary and “echoic memory with ability to absorb and spew back large tracts of dialogue gleaned from movies, youtube videos, etc.” Yet, those skills, she said, do not represent her son’s functioning level or overall cognitive abilities.

Myerson said her son has a “borderline” IQ and cannot perform basic math skills such as division and multiplication, cannot write a paragraph, and has no danger awareness – a common characteristic of people with autism. She said he has gone to sleep with lit candles on his bed and has ridden his bike in front of cars when trying to cross streets.

A DMH official did not return a call last week from COFAR, seeking more information on the efforts reportedly being made by the department and DDS to improve its assessment of clients with co-morbid autism and mental illness.

Disability Law Center aids woman who has been kept away from father and sister by DDS

January 30, 2017 1 comment

In the wake of reports that an intellectually disabled woman has been prohibited for more than a year by the Department of Developmental Services from having any contact with her father and sister, a federally funded legal assistance agency has arranged for legal representation to help the woman challenge the ban.

The Boston-based Disability Law Center opened an investigation late last year of a decision by a DDS-paid guardian to prohibit contact between the woman and her father, David Barr, and sister, Ashley Barr. Based on privacy concerns raised by the DLC, we are no longer publishing the woman’s name.

Earlier this month, a DLC attorney said the agency had assisted in making an attorney available at no charge to the woman to challenge the visitation ban in probate court, if she chooses to do so. The attorney said he was precluded by confidentiality requirements from discussing the investigation or any conclusions he may have reached in the case.

Since Thanksgiving of 2015, David and Ashley Barr have had no information about the woman’s whereabouts. She is believed to be living in a DDS-funded group home, but the Barrs have no idea where that residence might be located.

COFAR has reported that a DDS guardian imposed the ban on all contact with the woman by David and Ashley primarily because they were viewed as too emotional when they were allowed to visit her. Neither David nor Ashley Barr have been charged or implicated in any crimes, yet they said they feel they have been treated by DDS as if they are criminals.

In COFAR’s view, restricting family members from visiting a loved one impinges on a fundamental human right, and the DDS guardian should at least have obtained a probate court order before doing so. DDS should also have made sure the woman had access to legal counsel who could challenge the visitation ban on her behalf. DDS reportedly did neither of those things.

The case appears to involve a clear violation of DDS regulations, which state that people in the Department’s care have the right …“to be visited and to visit others under circumstances that are conducive to friendships and relationships…” (115 CMR 5.04)

The right to visitation is, moreover, a key aspect of family integrity in international human rights law. As an article in the Berkeley Journal of International Law states, “Sufficient consensus exists against particular types of family separation…to constitute customary international law.”

The article discusses Nicholson v. Williams, a class action lawsuit by a group of mothers against the New York City Administration for Child Services (ACS). The lawsuit “challenged ACS’s policy of automatically removing children from homes where domestic violence had occurred even if it meant removing them from the victims rather than the perpetrators of that violence.”

The children of the plaintiffs in Nicholson were kept in foster care for several weeks. According to the law journal, the court “cited the emotional and developmental damage done to the children, (and) the destruction of their family relationships…” that occurred as a result of the separation of the children from their parents (my emphasis).

We would note that the ACS lawsuit was a case involving the removal of children for just a few weeks. The Barr case involves the removal of a family member for more than a year so far, with no indication from DDS that family contact will ever be restored.

While the developmentally disabled woman in Barr case is no longer a child, she has been found to be mentally incapacitated and in need of a guardian. As such, she is in a similar legal position to a child in that she is not considered competent to manage her personal or financial affairs.

The court in Nicholson v. Williams cited specific international provisions including the Universal Declaration of Human Rights, and found that the New York ACS policy “violated the basic human rights of family integrity and freedom from arbitrary interference with family life, as well as the specific right of a child to be cared for by her parents.”

In what seems almost an obvious observation, but one that doesn’t seem to have occurred to DDS, the Berkeley law journal article notes:

People simply care a great deal about their families, and often suffer more from losing them than they do even from serious individual harms they suffer personally.

A couple of other points made in the law journal article are worth highlighting. One is a statement that temporary removal of children from families may cause “lasting harm to the children…especially if frequent visitation is not allowed during the removal period.”

The article also points out that the International Convention on the Rights of the Child (ICRC) imposes obligations on states in situations where families have already been separated. In particular, the ICRC states that where children are separated from one or both parents “the state must furnish the parents or children with any available information regarding their family members’ whereabouts” (my emphasis).

The Massachusetts Supreme Judicial Court weighed in last spring with a decision upholding the right of the grandfather of a developmentally disabled woman to challenge severe restrictions placed on his right to visit her.

As we’ve said before, and will again, major reforms are needed in the state’s probate court system in order to ensure the rights of families to maintain contact with their loved ones in DDS care. One of the first steps is for the Legislature to finally pass a bill (filed in the current session as HD 101) that would require probate judges to presume parents to be suitable guardians for persons with developmental disabilities.

Without interviewing family, DDS upholds complete ban on family contact with developmentally disabled woman

November 28, 2016 Leave a comment

After a “careful review” that did not happen to include interviews with at least two of the three principals in the case, the Department of Developmental Services has upheld an indefinite ban on all contact between those two individuals and a developmentally disabled woman.

The ban has now been in effect since Thanksgiving of 2015 on all communication between the disabled woman, Chelsea Barr, and her father, David, and her sister, Ashley.

Meanwhile, Ashley and David Barr said they feel abandoned by two of their state legislators who have declined even to send a letter to DDS Commissioner Elin Howe expressing concern about the emotional distress that Ashley and David are experiencing in being denied contact with an immediate family member for more than a year. (More about that below.)

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

COFAR has reported that a DDS guardian imposed the ban on all contact with Chelsea Barr by David and Ashley primarily because they were viewed as too emotional when they were allowed to visit her. Since the beginning of this year, DDS has not even informed David or Ashley as to where Chelsea is living.

COFAR has asked DDS Commissioner Howe to restore David and Ashley’s contact with Chelsea, who has both an intellectual disability and mental illness.  In early October, Howe stated that the matter was under review by the Department.

Howe did not respond to subsequent requests by COFAR Executive Director Colleen M. Lutkevich in early November for information on the status of the Department’s review or whether it would include interviews with Ashley and David Barr.

Then, in a November 17 email to Lutkevich, DDS General Counsel Marianne Meacham stated that the departmental review had concluded that the restrictions on the Barrs’ contact with Chelsea and the Department’s handling of the matter had all been appropriate.

“Without disclosing confidential information, this matter has been carefully reviewed, and we believe that appropriate steps have been taken by the Department and the Probate Court,” Meacham’s email stated. “Should circumstances change, there is recourse through the Probate Court.”

Both Ashley and David said they had not been contacted by anyone from DDS as part of that departmental review. They said they had hoped for a call, and would have gladly answered any questions DDS might have had about what actually occurred when they were previously permitted limited visits with Chelsea.

“There is no way DDS has done a careful review in this case,” Lutkevich said. “This has all the earmarks of a state agency that embarked on an internal review with a predetermined outcome, which was to clear itself of any mishandling of this matter. This case needs to be reviewed by an impartial, outside party.”

While state law prevents us from discussing criminal charges that may be connected with this case, we can state categorically that neither David nor Ashley has been implicated or charged in any crimes. Yet both feel they have been treated like criminals in being kept in the dark about Chelsea and prevented from having any contact with her.

And while Ashley and David may technically have the ability to go to court, they have not been able to afford the expense of a lawyer. As a result, all of the decisions made by probate court judges in the case have gone against them, including a bid by David to regain guardianship of Chelsea.

As COFAR has reported, a DDS attorney and Chelsea’s DDS guardian and service coordinator all made what appeared to be prejudicial and damaging statements about David and Ashley during an August 2015 probate court hearing in which David had sought to be named Chelsea’s guardian. None of those statements was challenged during the hearing.

The prejudicial statements include a claim by Whitbeck that erroneously implied that David provided inadequate care for Chelsea when she previously resided with him, and a separate speculative statement that David and Ashley wanted to visit Chelsea out of “a sense of guilt.”

In addition, hearsay statements were made in the hearing by both Dorothy Wallace, Chelsea’s then temporary guardian, and Jill Casey, her DDS service coordinator, that appeared to be intended to cast David and Ashley in a negative light before the probate court judge.

In one instance,  Wallace testified that David had been overheard by staff in one hospital promising Chelsea he would become her guardian and would take her home soon. That reportedly made Chelsea resistant to the idea of continuing to stay in the hospital. But David denied that he said that.

No evidence was presented in the August 2015 probate hearing supporting Wallace’s  additional claim that emotional family interactions caused psychotic symptoms in Chelsea. That claim by Wallace, however, appears to be a primary reason for her decision to impose increasingly severe restrictions on family contact, culminating in the total ban as of Thanksgiving of 2015.

The Barrs’ legislators decline to stand up to DDS for them

Following the imposition of the ban on contact with Chelsea, a friend of the family sought help for the family from state Representative Linda Dean Campbell of Methuen, David Barr’s local House member. The friend said Campbell’s office did not provide any help as far as she knew.

COFAR contacted Campbell’s office in early October and spoke to a member of Campbell’s staff, who said he did contact DDS about the matter after hearing from the Barr family’s friend. At the time, the DDS staff member said, DDS put him in touch with Wallace, who gave similar reasons for having cut off the family’s contact with Chelsea that she had given in probate court.

Campbell’s staff member said that after that conversation with Wallace, he didn’t pursue the matter further. The staff member did not contact either David or Ashley to ask for their response to Wallace’s claims.

COFAR attempted to renew the request for help for the family with both Campbell’s office and the office of Senator Kathleen O’Connor Ives, whose district includes Methuen. A staff member from Ives’ office did subsequently contact Ives’ office’s DDS liaison — a DDS deputy assistant commissioner. However, she said the DDS liaison refused to discuss the matter with her for reasons that she said were not clear to her.

At that same time, COFAR requested that both Campbell and Ives send a joint letter to DDS Commissioner Howe, expressing concern about the cutoff of David and Ashley’s contact with Chelsea.

However, in mid-November, about 10 days after COFAR made the request, the staff members for both Campbell and Ives said the lawmakers would not send a letter to Howe. Ives’ staff member said Ives didn’t think a letter was necessary or would accomplish anything, while Campbell’s staff member said Campbell’s legal counsel raised a concern that sending such a letter could violate Chelsea’s privacy rights.

In an email sent in response to both legislative staff members, I said that we at COFAR strongly disagreed that a letter from the legislators to Howe would not accomplish anything. We also disagree that Chelsea’s privacy would be violated by such a letter.

“Given that the DDS liaison has not been helpful in this case, it is all the more important to go up the line to the commissioner,” I said in my email message. “This family needs to know that someone in the political system cares about their situation.”

“Lutkevich also sent an email message to Campbell’s staff member. Lutkevich’s message stated that:

There is really no valid reason that a simple letter can’t be sent asking why this family cannot 1) be informed of their intellectually disabled daughter/sister’s whereabouts, and 2) set up visits, even if supervised.  Prisoners are allowed visitors, as are families under DCF (Department of Children and Families) supervision, but this young woman with an intellectual disability is not even being allowed to have the slightest bit of contact with the only family she knows.  We can only imagine how abandoned she must be feeling.

Neither Lutkevich nor I received any response from either Campbell’s or Ives’ offices to our emails.

Unfortunately, it is no longer surprising to us that DDS would disregard its own regulations that require humane and least restrictive care, or even that members of the state Legislature would decline to go to bat for their constituents.

As I noted in a recent blog post that generated a lot of discussion about the reasons for the outcome of this year’s presidential election:

Whether it is a global trade deal that ships American jobs overseas, or a decision by a state legislator not to stand up for a constituent who has a grievance with the executive branch, government has lost sight of its real purpose.

Court statements show DDS employees held a bias against family members seeking to visit Chelsea Barr

November 16, 2016 7 comments

In statements made in a probate court hearing last year, an attorney for the Department of Developmental Services and two other DDS employees appeared to demonstrate a bias against the father and sister of a developmentally disabled woman who have been seeking to visit her.

The August 17, 2015 hearing in Essex Probate and Family Court appears to have set the stage for a complete ban as of last Thanksgiving on all contact with Chelsea Barr by her father, David, and sister, Ashley.

COFAR has urged DDS Commissioner Elin Howe to restore David and Ashley’s contact with Chelsea, who has both an intellectual disability and mental illness. COFAR is also questioning why DDS recommended the appointment of a guardian for Chelsea who had never previously met her.

In recommending the guardian, DDS passed over David, Ashley, and a family friend, who had offered to be Chelsea’s guardian and knew her well.

In the wake of allegations that Chelsea had been sexually assaulted over a two-year period by an alleged boyfriend of her mother’s, Chelsea was removed from her mother’s care and from regular contact with most of her family in 2014.

Since last Thanksgiving, David and Ashley have been barred by the guardian from all contact with Chelsea, and even from knowledge of her whereabouts.  However, neither David nor Ashley have been charged or implicated in the sexual assault case.

The 70-minute recording of the probate hearing is replete with statements and testimony from Dorothy Wallace, then Chelsey’s temporary guardian, and from Jill Casey, a DDS service coordinator, and Barbara Green Whitbeck, a DDS attorney, that appear to indicate a bias against David and Ashley.  The statements appeared to be intended to sway the probate court judge against appointing David as Chelsea’s permanent guardian or allowing more family contact with her.

The prejudicial statements in the hearing include a claim by Whitbeck that erroneously implied that David either caused or was responsible for abuse of Chelsea when she was 12 years old, and a separate speculative statement that David and Ashley wanted to visit Chelsea out of “a sense of guilt.” Wallace also erroneously testified that records indicate Chelsea was sexually abused by another family member at the age of 12.

Chelsea (left), David, and Ashley Barr, at Tewksbury State Hospital last Thanksgiving, the last time David and Ashley were permitted to visit her.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital last Thanksgiving, the last time David and Ashley were permitted to visit her.

Other statements by Whitbeck, Wallace, and Casey appeared to be hearsay, and are strongly disputed by Ashley and David Barr. However, the statements all went unchallenged during the probate hearing because the Barrs did not have an attorney present at the proceeding who might have cross-examined the DDS employees.

The recording of the court hearing provides an unusual glimpse into how DDS, a large public agency, uses its superior legal power and resources to overcome family resistance to its decisions about developmentally disabled people in its care. Without an attorney to represent them, individuals are virtually helpless in probate court cases.

The hearing concerned a request by David and Ashley that they resume regular contact with Chelsea and that David be appointed as her guardian. The judge, however, ruled instead in favor of the appointment of Dorothy Wallace, the candidate recommended by DDS, as Chelsea’s permanent guardian.

In her testimony, Wallace said the reason for her restrictions on contact with Chelsea was that David and Ashley became too emotional when they were permitted visit her, and that this caused Chelsea to have psychotic symptoms.

Wallace also said that clinicians in one hospital were upset that David had promised Chelsea he would become her guardian and would take her home soon. That reportedly made Chelsea resistant to the idea of continuing to stay in the hospital, according to Wallace.

Wallace’s testimony about what David might have said to Chelsea appears to be hearsay, however. David denied that he ever promised Chelsea he would immediately take her home from the hospital. None of the clinicians who reportedly overheard David making that promise to Chelsea were asked or required to testify at the probate hearing.

No evidence was provided at the 2015 hearing, moreover, as to how or why an emotional interaction with her family would cause Chelsea to have psychotic symptoms. Wallace repeatedly testified that her intention was to reunite the family once Chelsea had been clinically stabilized. Yet, David and Ashley remain barred from any contact with Chelsea more than a year later.

In what was perhaps an unintentionally telling admission about the level of isolation to which Chelsea has been subjected, Wallace testified at one point that she was surprised to find out that an aunt of Chelsea’s had actually gotten in to see her at a hospital a few weeks before the probate hearing was held. “A clinician called and said an aunt had visited her,” Wallace testified. “I said I didn’t think anyone was visiting. How did they find her (Chelsea)?”

In early October, DDS Commissioner Elin Howe responded to an email from COFAR Executive Director Colleen M. Lutkevich, saying the Barr case was under departmental review. Since that time, however, neither David nor Ashley Barr have been contacted by DDS as part of that review.

Howe has not responded to follow-up emails from Lutkevich, seeking information on the status of the DDS review of the case or whether or when David and Ashley will be allowed to see Chelsea again.

DDS has also declined to comment on the statements made at the 2015 probate hearing. In an email, DDS General Counsel Marianne Meacham stated that the Department would not comment “on matters involving confidential and protected client information, and which are the subject of a pending criminal prosecution.”

The recording of the 2015 probate hearing, however, is a public document. While cases involving sensitive probate issues are usually impounded, meaning they are blocked from public access, DDS, for unknown reasons, only requested that the Barr case be impounded last August, a year after the hearing was held.

Damaging opening statement from the DDS attorney

During the August 2015 Probate Court hearing, DDS Attorney Whitbeck made an opening statement that was potentially damaging and yet highly misleading about David Barr. Whitbeck said witnesses she planned to call to testify in the hearing would:

…give a clear picture of a young woman who really has suffered unspeakable traumas in her life, beginning all the way back to about age 12 when she was residing with her father, and again in the past couple of years when she was residing with her mother… (my emphasis).

This statement appears to imply that David Barr either personally abused his daughter or was responsible for abuse. But what Whitbeck was actually apparently referring to was one incident when Chelsea was 12 in which a friend of her brother allegedly inappropriately touched her when family members were not present, according to Ashley. David Barr has never been accused of or implicated in any abuse of Chelsea, and neither has her brother.

There was no testimony given at the hearing that implicated David or Ashley in any abuse of Chelsea.  Wallace did testify that she understood that Chelsea had Post-traumatic stress disorder (PTSD) “dating back to the age of 12 or 13 due to alleged sexual abuse from her brother.”  This statement was not only hearsay, but it is apparently wrong. Other than her mother in 2014, no member of the family has ever been implicated or charged in any abuse of Chelsea.

As noted, David and Ashley had no attorney representing them during the hearing, and therefore no one challenged Wallace’s claim about that alleged abuse of Chelsea when she was 12 or 13, or questioned how Wallace had come across that information.  No one, in fact, asked that Wallace or the DDS attorney produce any records backing up her claim that Chelsea had been abused by a family member when she was that age.

Whitbeck also said in her opening statement that “it is understandable that the family wants to be involved with Chelsea, out of a sense of obligation and maybe guilt…” This statement also went unchallenged.  It’s a potentially damaging statement. Whitbeck never specified what the family’s guilt might be about and was never questioned about it.

David and Ashley portrayed as overly combative

Other statements made by Casey and Wallace appeared to be intended to portray David and Ashley as overly combative with them. Whitbeck described David as a “bully,” and Casey testified that he had sworn at her when they first met and had once left a threatening message on her answering machine. She said his threat on the answering machine was a statement that “‘I’ll get you people,’ or something like that.” During the hearing, David tried to dispute that he had said that, but was admonished by the judge for interrupting.

Ashley maintains that David has never been physically threatening, but may have threatened to sue DDS at some point over the restrictions placed on his contact with Chelsea.

Wallace, when asked to describe the family’s interaction with her, testified that the family had been “chaotic and caustic.” But Wallace provided no examples of statements or actions by David or Ashley that could be characterized in those terms.

Wallace said she had talked with David only once or twice, and had had “multiple conversations” with Ashley in which she had tried “to educate Ashley in regards to how truly sick her sister is psychiatrically.”  As Wallace described her interaction with Ashley:

She (Ashley) kept saying all she (Chelsea) needs is family. I agree that at some points Chelsea needs her family. It was never my intent to take her away, but when she is not stable and the hospital is calling me saying they’re (the family is) destabilizing her even more, I had to come and say we’re going to terminate things.”

Hearsay statements 

Many of the accusations made against the family by Wallace and Casey at the hearing were based on apparent hearsay.  In particular, Wallace testified that she had heard someone in one hospital say that David told Chelsea she would be coming home soon and that he would be named her guardian.  This apparently upset the clinicians at the hospital, who then asked Wallace to ban further family visits, according to Wallace.

But Ashley and David disputed that David had made any such promise to Chelsea. Rather, he said, he was trying to reassure Chelsea that one day she would be coming home.

Similarly, Whitbeck stated that she understood Ashley had been overheard telling Chelsea not to listen to hospital staff. Ashley disputed that during the hearing, testifying that she had told her sister only not to listen to other children in the hospital whom Chelsea said she believed had been making fun of her. “I would never tell Chelsea not to listen to doctors,” Ashley testified. ” We want her to get the treatment she needs. We are not trying to interrupt her treatment.”

Casey also testified that she heard that David had taken Chelsea to a doctor for anti-psychotic medications only once. This also appears to be hearsay. Ashley told COFAR that David took Chelsea for medications and to doctors’ appointments “multiple times.”

 

Chelsea and David at Tewksbury State Hospital. David and Ashley were accused of being too emotional when they visited her.

Chelsea and David at Tewksbury State Hospital. David and Ashley were accused of being too emotional when they visited Chelsea.

A lack of familiarity with Chelsea and her family

Testimony provided by Wallace indicated either a lack of familiarity with Chelsea and her family or a lack of time to represent her adequately or act in her best interest. This raises questions in our view as to why Wallace was recommended by DDS to be Chelsea’s guardian, and why an offer from a family friend who knew Chelsea well was apparently disregarded.

Wallace, who had never met Chelsea until just before she was appointed as her temporary guardian, appeared to be unaware or unsure of details of Chelsea’s care and living arrangements in the months prior to the August 2015 probate hearing.

After having been removed from her mother’s care, Chelsea was moved in and out of shared-living arrangements and hospitals. She was admitted to Arbor Fuller Hospital in Attleboro in March 2015 and discharged in June of that year, just two months prior to the probate hearing. Asked during the hearing where Chelsea was sent after her discharge from Arbor Fuller, Wallace testified that she was unsure. “I think she want to respite or to Donna’s (a shared-living arrangement). I don’t know,” she said.

Wallace said she was aware that Chelsea ended up at Tewksbury State Hospital in early August 2015, but she was unsure of the name of the psychiatrist at Tewksbury State who was in charge of Chelsea’s anti-psychotic medications there. Under questioning, Wallace also said she was unaware that Chelsea had a sister in addition to Ashley.

Asked how many times she had visited Chelsea in the seven-month period since she had been appointed as her temporary guardian, Wallace described what appeared to be approximately six meetings with her.  Few if any of those meetings appeared to be strictly social visits. At least one of those meetings was a clinical care planning meeting regarding Chelsea’s ISP (Individual Support Plan), while another visit was to meet an aunt of Chelsea’s who was allowed to visit Chelsea at Tewksbury State.

As we’ve noted before, we think this case is being mishandled by DDS. We see no justification for the continuing refusal of DDS to allow any contact in this case between a young woman with special needs and members of her family who have nothing to do with the criminal proceedings that are involved. That denial of contact is further victimizing both this young woman and innocent members of her family.

Father and sister banned from all contact with developmentally disabled woman because they cried when they saw her

October 19, 2016 5 comments

Can it really happen in America that the state can take an individual into its custody, and then not even let that person’s family know where she or he is, for months on end?

Yes, that is apparently the case if the individual is mentally ill or intellectually disabled.

In one of the more bizarre and severe instances of restrictions placed by the state on family contact, a court-appointed guardian has banned family members of an intellectually disabled woman from all contact with her because they allegedly became too emotional when they visited her. The 28-year old woman, Chelsea Barr, is dually diagnosed with intellectual disability and mental illness.

Chelsea’s father, David, and sister, Ashley, have not even been told for almost a year where she is living. Clinicians in at least one hospital said the family was to blame for signs of agitation and psychotic symptoms allegedly shown by the woman after the family visits.

The ban on family contact was imposed after Chelsea alleged that she had been sexually assaulted by the alleged boyfriend of her mother over a two-year period from 2012 to 2014. Chelsea’s mother, Nancy Barr, and her alleged boyfriend, John Leone, have both been arrested and are facing trial in Salem Superior Court in connection with the alleged assaults.

In addition to banning Leone and Nancy Bar from visiting Chelsea, a guardian with the Department of Developmental Services last Thanksgiving extended the prohibition to other family members and a family friend, who have not been implicated in the alleged crime.  The only family member who is currently allowed to visit Chelsea is a maternal aunt, who Ashley Barr said had little prior contact with Chelsea and maintains little contact with either Ashley or her father.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

“As far as I’m concerned, Chelsea’s been kidnapped,” David Barr said in an interview.  Both David and Ashley said their lack of contact with Ashley and knowledge of her whereabouts have filled them with emotional distress. “We don’t even know where she is, and no one will tell us,” Ashley said. “It’s really, really hard to take.”

The Barr’s case is, unfortunately, not unique. We have reported on other cases (here and here) in which family contact with developmentally disabled family members has been severely restricted by the Department of Developmental Services. These restrictions also appear to happen in cases in other areas of the health care system, such as the highly publicized case of Justina Pelletier, who was held for nearly a year in a locked ward in Boston Children’s Hospital, and kept from all contact with her parents.

“This is unfortunately yet another case in which DDS and the probate court system has failed families of developmentally disabled persons,” said Colleen Lutkevich, COFAR executive director. “The family always seems to be made the focus of blame when problems occur.

“In this case,” Lutkevich added, “a young woman, who was victimized by sexual assault, is being further victimized by being isolated from members of her immediate family who could provide her with the love and support that she needs.”

David and Ashley have tried for months to get answers from the Department of Developmental Services and from the Department’s court-appointed guardian for Chelsea, and have gotten little information from them. They have gone to their local legislators and gotten little help, and have even gone to the media, but have been unable so far to get any news outlets to report their story.

Neither David Barr nor any other members of Chelsea’s family, other than her mother, are alleged to have known about the alleged sexual abuse while it was happening, and none have been charged or implicated in the crime. David Barr was divorced from Nancy Barr in 2003.

During the period of the alleged assaults, Chelsea had been under the care of her mother and had been living in her mother’s home. David Barr said that Nancy Barr has also been diagnosed with mental illness.

After Chelsea told a family friend about the alleged abuse in 2014, the friend reported the matter to police, and Chelsea was immediately removed from her mother’s care. She was apparently placed in a shared living arrangement in Haverhill, but that location was not disclosed at the time to any other members of the family.

In the months that followed, the family was only sporadically informed about Chelsea’s whereabouts.  Chelsea’s sister Ashley and her father said that virtually no information was provided to them for the first month after Chelsea’s removal. They were then allowed to visit her only a handful of times, either at a DDS area office or in Massachusetts hospitals to which Chelsea was admitted, reportedly after psychotic episodes.  Ashley Barr currently lives and works in Rhode Island.

Last Thanksgiving, the DDS guardian, Dorothy Wallace, a psychiatric social worker, terminated all family contact with Chelsea. Ashley said she and her father have not been permitted to visit or call Chelsea for nearly a year, and they don’t know where she is currently living.

Guardian testifies against the family

Wallace, the DDS guardian, has declined to speak with COFAR regarding the case. In statements she provided in probate court in August 2015, she said she ordered that the family’s contact with Chelsea be restricted at that time because Chelsea’s father and sister would become overly emotional during visits with her. Wallace said clinicians in various hospitals in which the visits took place complained that Chelsea would be agitated and upset after the visits and that her symptoms of bipolar disorder would then become aggravated.

Wallace also contended that on one occasion, Ashley was overheard telling Chelsea not to listen to medical personnel at a hospital.  Ashley disputes that, saying Chelsea had told her people were making fun of her, and that she told her not to listen to whoever was making fun of her. “Maybe someone misinterpreted me,” Ashley testified during an August 2015 probate court hearing. “I would never tell Chelsea not to listen to doctors.”

Wallace and Jill Casey, Chelsea’s DDS service coordinator, testified in the August 2015 probate hearing that their goal was to reunite Chelsea with her family once she was “clinically stabilized.” However, as of October 2016, more than a year later, the family has received no word from DDS as to when or if such a stabilization has occurred.  Ashley Barr said her calls and text messages to both Wallace and Casey have gone unanswered.

DDS Commissioner Elin Howe responded to an email from COFAR about the case on October 6, and would say only that the case was under review. However, as of today (October 19) neither David nor Ashley had been contacted by the Department as part of that review.

Ashley acknowledged she and her father did become emotional at times during visits with Chelsea because she appeared upset at being kept isolated from them and often appeared to be over-medicated.

“For several visits we did cry in front of Chelsea, I mean how could we not?” Ashley said. “She was alone, scared, by herself, and just went through a horrific thing for about two years. So yes, my father and I did cry, and I was an emotional mess for a very long time.  Watching my sister all drugged up, she could barely talk, and given the state she was in, it was very hard to keep it in. I walked out of the room most of the time so my sister wouldn’t see me.”

In one of the last instances in which they were allowed to visit Chelsea, Ashley said it appeared she had not been bathed.  Ashley personally gave her a shower at the hospital. Her hair was so dirty and matted, Ashley said, that she had to use an entire bottle of shampoo and conditioner to untangle it.

The enforced isolation of Chelsea appears to violate DDS regulations, which include the right to humane and adequate care and treatment, self-determination, least restrictive care, and integration of the person in the community. In addition, people in DDS care have a right to communicate, the right to have reasonable access to a telephone and to make and receive confidential calls, and the right to be visited and to visit others “under circumstances that are conducive to friendships and relationships…”

David Barr frustrated in gaining guardianship

Like many probate cases, this case has a complex history. David Barr has tried without success to gain guardianship of Chelsea following his divorce from her mother.  In early 2015, the Essex County Probate Court passed over David Barr and a long-time family friend, who had offered to be Chelsea’s guardian, and instead appointed Wallace, the DDS-paid psychiatric social worker, who had never met Chelsea, as her guardian.

David Barr said he would have supported the family friend as Chelsea’s guardian, but “we were totally ignored.”  Barr has since filed a new petition for guardianship in probate court.

In the probate court hearing in the case in August 2015, David was described by Chelsea Barr’s DDS service coordinator as a “bully” because he allegedly swore at her when he first met her and once left a threatening message on her voice mail that he was going to “get you people.”

The Barrs had no attorney at the probate hearing, and there was consequently no cross-examination of the service coordinator.  Ashley Barr says her father was threatening only to someday sue DDS over the restrictions placed on his contact with his daughter. “Not one time did my father ever mention coming after them violently,” Ashley stated in an email. “He’s trying to get his daughter back and not end up in jail.”

Ashley added that her father was not liked by some of the staff of Chelsea’s day care provider agency because he would become angry and reprimand the staff following several instances in which Chelsea walked out of the provider’s facility unattended.

Restrictions on visits and information blackout began after the abuse was reported 

Ashley Barr said that after the alleged abuse of her sister was discovered in October 2014 and Chelsea was removed from her mother’s care, “nobody would talk to us.”

Ashley said she was initially unable to get any information about Chelsea or her whereabouts from either the DDS service coordinator or her supervisor at DDS.  She said she even contacted the police and was unable to learn anything from them. “My dad and I have no criminal record,” Ashley said, “yet we were still treated like criminals.”

Then, in November 2014, Ashley was contacted by Jill Casey, the DDS service coordinator, who said she would be allowed to visit Chelsea at the DDS area office in Lawrence for about an hour. David was not invited to that visit.

Ashley said she was told during the visit not to ask Chelsea any questions about where she was living. She said Chelsea “looked scared,” and said several times that she wanted to see her father and to come home.

A family friend, who was allowed to visit Chelsea around this time, said Chelsea was living in a home in Haverhill owned by a woman who had two or three other developmentally disabled persons living there. The friend said she was instructed not to tell anyone in Chelsea’s family where Chelsea was.

The friend said she was allowed on one occasion to take Chelsea out of the Haverhill home for the afternoon. Chelsea was upset, she said, because she wanted to see her family. She also wanted to sleep over at the friend’s house, but that wasn’t permitted by the guardian.

It wasn’t until April 2015 that Ashley was next allowed a visit with Chelsea – this time in Arbor Fuller Hospital in Attleboro, where Chelsea was scheduled to celebrate her 27th birthday.  Ashley said she was allowed a number of visits to Arbor Fuller, and David was allowed to visit as well, though a lesser number of times. It was apparently at Arbor Fuller, that Ashley and David first reacted too emotionally when they saw Chelsea.

In testimony in the August 2015 probate court hearing, Wallace, the guardian, contended that David Barr further agitated his daughter during at least one visit by telling her that she would be going home soon and that he would become her guardian.  Hospital clinicians, Wallace said, subsequently asked her to terminate the family’s visitation privileges.

David Barr testified in response that he was trying only to reassure his daughter, who would become upset whenever he and Ashley had to leave. “I was just trying to provide reassurance that she would go home and that I would always be by her side and would try to get the guardianship,” David said. “She was there alone and scared. Isn’t that reassuring someone? Trying to give her confidence she isn’t going be left alone…?”

DDS and guardian repeatedly said family needed to be “educated”

During the probate court hearing, Wallace, Casey, and Barbara Green Whitbeck, a DDS attorney, repeatedly stated that they considered it necessary to “educate” David, Ashley and potentially other family members about what was in Chelsea’s best interest and the extent of her mental illness.

“I talked to Ashley,” Wallace testified. “She was angry and wanted to maintain the visits (with Chelsea).  I tried to educate her that Chelsea is psychotic and symptomatic – that it can take two, three, four months (to stabilize) her.  It’s not quick.  I don’t think they (the family) understand the magnitude (of her illness).”

Ashley responded in an interview that she and her father felt that Wallace and Casey were being condescending in seeking to “educate” them about Chelsea.  “We have known and talked about Chelsea’s conditions since day-one, 20 years ago, and about what Chelsea has been diagnosed with. It’s nothing new to us,” Ashley said. “We don’t need them to repeat things that we already know about Chelsea’s conditions.”

In June 2015, Ashley found out from her aunt that Chelsea had been admitted to Lawrence General Hospital because her psychiatric symptoms had flared up.  Ashley was subsequently allowed to visit Chelsea a handful of times at Lawrence General, but David wasn’t, for reasons that were not provided to them.

After a short stay at Lawrence General, Chelsea was admitted to Tewksbury State Hospital. Ashley said that when she was living in Connecticut at that time and drove up to Massachusetts several times a week to visit Chelsea.

Chelsea’s father was finally allowed to visit her at Tewksbury State in October 2015. Chelsea appeared drugged during that visit as well, according to Ashley. And that was the visit in which Ashley said she needed to use an entire bottle of shampoo and conditioner to untangle her hair.

That was also the last time either David or Chelsea were permitted to visit Chelsea. “We were told by Dorothy Wallace we were getting Chelsea too excited and they were trying to control her medicine,” Ashley said. “That was an excuse. How else is she going to react when she sees her family and wants to go home? Of course, she’s going to get upset.”

Ashley did manage to see Chelsea without permission at Tewksbury State in December when she visited under an assumed name. She gave her Christmas presents during that visit. It was the last time she would see Chelsea.

Chelsea and her father hug good-bye at Tewksbury State Hospital.

Chelsea and her father hug good-bye at Tewksbury State Hospital.

In May, Ashley found out she was pregnant and learned that she was going to have a girl. She contacted the guardian to ask whether Chelsea would be allowed to come to the baby shower, which was planned for a restaurant in Andover. She said Wallace denied the request and told her Chelsea would not be informed that she was pregnant.

Family friend also denied visits 

The family friend who initially reported the alleged sexual abuse of Chelsea to police had initially been allowed to visit Chelsea, as noted earlier. However, when the friend tried to visit Chelsea at Tewksbury State in April on her 28th birthday, she was told that Chelsea was no longer there.

The friend said she was also told by a staff member at the hospital that she too had been placed on a no-visitor list.  She said she was not given a reason for that prohibition. The friend said she understood that the only family member still allowed any contact at that point with Chelsea was the aunt, who had previously had little to do with her.

Ashley said David did hear from Chelsea one last time in July when Chelsea apparently managed to find a cell phone and called him. She said the cell phone had a New Hampshire area code, but that Chelsea did not know where she was.  The call was terminated after two or three minutes, she said.

“At that point, we knew she was still alive,” Ashley said. “But that’s all we knew.”

Call the Barr’s local legislators

When we at COFAR heard about this case, we contacted the office of David Barr’s local House member, State Representative Linda Dean Campbell.  Both Ashley and the family friend had previously contacted Campbell’s office, but a staff member in the office indicated at that time that the office could do little to help them.

When we contacted Rep. Campbell’s office earlier this month, the staff member did offer to contact DDS on behalf of the Barrs. The staffer reported back that DDS would not discuss the case with Campbell’s office, but would pass along Campbell’s concerns to others in the Department.

You can contact Rep. Campbell’s office at 617-722-2430, or send an email to Linda.Campbell@mahouse.gov, and urge them to continue to try to work with DDS to resolve this case.

In addition, you can contact Governor Baker’s office at 617-725-4005; and DDS Commissioner Elin Howe at 617-727-5608; or email: elin.howe@state.ma.us. Say you believe David and Ashley’s visits to Chelsea should be restored immediately. Also, let them know that you hope and expect that as part of their review of the case, DDS officials will contact and interview both David and Ashley.

GoFundMe appeal

David and Ashley Barr have also launched a GoFundMe appeal for funds to hire an attorney to represent them in probate court. You can find their petition and contribute to it at https://www.gofundme.com/helpchelseaB.

Guardianship under fire by the same groups that oppose congregate care and support privatization

September 30, 2016 9 comments

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result.

One prominent threat to guardianship appears to be embodied in a process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well.

To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

As Jill Barker notes in the Michigan-based DD News Blog:

Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible.

Moreover, many of those SDM advocates appear to be from the same groups that have long opposed critically important congregate-care options for the developmentally disabled, and their language in support of SDM is similar to their longstanding ideological language in opposition to congregate care.  In particular, they make the same questionable charges about guardianship that they have about congregate care — that guardianship leads to “segregation,” and that all persons under guardianship are prevented from “reaching their potential.”

We believe that like congregate care, guardianship is a necessary part of the total spectrum of care, particularly for people with the most severe levels of developmental disability, and that those choices and options shouldn’t be taken away from disabled individuals and their families.

As a result, we counsel parents of developmentally disabled children to consider obtaining guardianship rights when their child reaches the age of 18.  Without such rights, family members are likely to have virtually no say in the decisions that are made by providers and the Department of Developmental Services with regard to their loved ones with developmental disabilities.

In a position paper on SDM, the VOR, a national advocacy organization for people with developmental disabilities and a COFAR affiliate, contends that SDM “could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written.”  The VOR adds that SDM threatens “to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.”

Similar groups and similar language against guardianship and congregate care

The CPR and similar advocacy organizations in other states favor reducing residential options and choices, particularly when it comes to congregate care, and they use similar arguments to support the replacement of guardianship with SDM.

The CPR has supported or been involved in numerous lawsuits to close developmental centers over the objections of families of residents. Their argument has been that clinical experts know better than family members about what is in the best interest of their loved ones. Those advocates also support the dismantling of sheltered workshops and the privatization of residential services for the developmentally disabled.

The CPR is now making similar questionable claims against guardianship and in favor of SDM. In a PowerPoint presentation delivered in 2014, the CPR maintained that guardianship results in “civil death” for developmentally disabled persons, and that a key principle of SDM is that “people are not inherently incompetent.”

That latter claim, which has also been made in opposition to congregate care, seems absurd to us if it means that no individual can be found to be incompetent.  Laws in Massachusetts and most other states require that people be found incompetent by courts in order to be considered for guardianship. If SDM advocates believe that no one is truly incompetent, then they must believe court rulings around the country involving thousands upon thousands of people were wrong. We don’t believe it’s possible that all, or even most, of those decisions were wrong.

Nevertheless, in a law journal article, SDM-proponent Leslie Salzman includes the following statement, which includes no citation, in a footnote:

Virtually everyone has the ability to participate in the decisions affecting his or her life, with the possible exceptions of persons who are comatose or in a persistent vegetative state. (my emphasis)

The CPR does acknowledge that some things about guardianship are good.  In the 2014 PowerPoint, the CPR states that guardianship “offers a form of protection and provides some safeguards against abuse,” and that guardianship “makes it clear who is the ‘decider.’”  But the CPR goes on to claim that guardianship results in a “loss of legal personhood” and a loss of civil rights such as the right to marry and vote.  And the CPR contends that guardianship leads to possible exploitation by the guardian.

We disagree with the CPR’s claims.  First, it does not appear to be true that a person under guardianship can’t vote. According to the Handbook for Massachusetts Guardians, which is published by the Massachusetts Guardianship Association, some incapacitated persons may have sufficient capacity to marry or vote.  In those cases, the guardian can seek the court’s approval for such actions.

Also, as the Massachusetts handbook notes, current state law provides a number of protections for persons under guardianship and encourages limited guardianships when possible.  Among the legal protections in place now is a requirement that guardians seek court authorization to make many major decisions for the incapacitated person – for example, admitting someone to a nursing facility for long-term care.  The guardianship handbook further advises guardians to act in the incapacitated person’s best interest at all times, to do what that person desires to do, and to visit them at least monthly.

While it’s true that guardians can potentially exploit incapacitated people in their care, we are not sure that exploitation is less likely with SDM.  If corporate providers, in particular, are on the SDM “network” teams, then there is a potential conflict of interest involved, since providers stand to make money by advocating for more services.

Barker points out in the DD News Blog that “guardianship abuse from family members can occur,” but she draws a crucial distinction — which SDM advocates appear to ignore — between the appointment of family members as guardians, and the appointment of attorneys, corporate entities and other professionals to that role.  Family members, Baker states, are far more likely to attend to the needs and wishes of their loved ones under guardianship than are corporate or state guardians “with dozens of wards.”

Barker, who is critical of the SDM movement, adds:

Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities.

We’ve witnessed this type of family support in many, many cases, such as that of Stan McDonald, who stopped clinicians and providers from giving unnecessary and dangerous anti-psychotic medications to his son, Andy.

Confusing the causes of isolation

In the law journal article, Salzman brings up many of the same arguments against guardianship that the CPR and the providers have used against congregate care, including the segregation charge.  But she doesn’t appear to distinguish between degrees of intellectual or developmental disability.

For instance, Salzman states that when an incapacitated person loses their decision-making power to a guardian, they experience feelings of isolation and helplessness, which leads to a further loss in functional abilities in a “vicious cycle.” But while this might be true for relatively high-functioning persons, it is certainly less true for lower-functioning individuals.  And it incorrectly assumes that all guardians, including family members, act as dictators and don’t solicit or take into account their wards’ wishes.

Salzman also appears to identify the wrong causes of the isolation she refers to.  She argues that persons with developmental disabilities feel isolation due to guardianship and to living in large institutions. But we have found that the isolation felt by these individuals is not due to guardianship or living in institutions, but actually to living in community-based settings.

There is often little real community integration in these privatized settings despite their being characterized as community-based. Unfortunately, there are usually few if any other choices available to guardians among residential settings because so many congregate-care settings have now been shut down and because states like Massachusetts fail to inform people waiting for residential placements of either congregate-care or state-operated sites that remain.

The lack of congregate-care options combined with the privatization of residential care appear to have actually increased the isolation of both individuals with disabilities and their families. Family-supported networking organizations have disappeared as developmental centers have been shut down.  People with developmental disabilities are often trapped in group homes in which they are rarely taken out into the community.

In Connecticut, families have lately protested  the planned privatization of state-run group homes, with one family filing a lawsuit to preserve their current facilities.  There are huge amounts of money to be made in privatization, in particular, and families seem to get in the way of that process.

As we noted, SDM may well work for high-functioning people, but we believe there would nevertheless have to be strict controls on it. We think that means, at the least, that corporate providers should not be permitted on the SDM “network” teams.

For lower-functioning people, our concern is that even if family members enter into SDM voluntarily, they may not realize that their decision-making power may well be diluted under those circumstances. Why would a family member want to agree to be just one vote on a team when it comes to the care of a son, daughter, brother, or sister?  We are all for limited guardianships when appropriate, but that team approach doesn’t make sense to us unless it is clear that the family member has the final say in all decisions.

Rather than eliminating guardianship, it would seem we should continue to work to improve the system, particularly for incapacitated individuals and their families. One reform is to ensure that attorneys are appointed to represent all individuals under guardianship if it is requested.  Another is for the Legislature to finally pass Stan McDonald’s bill that presumes family members to be the most suitable guardians for their loved ones.

More than six months later, Andy McDonald still has no legal representation in his guardianship case (with update)

September 1, 2016 1 comment

UPDATE: A new attorney for Andy McDonald will be appointed this week (the week of September 5) to represent him in his guardianship case, according to Mark Larsen, the director of the Mental Health Litigation Division of the Committee for Public Counsel Services (CPCS), the state’s public defender agency.

After letting us know on Friday that his agency would “look into” why the Middlesex County Probate Court has failed since last March to appoint an attorney to represent Andy McDonald, Larsen emailed me on Sunday (Sept. 4) with news of the imminent appointment.

The failure of the probate court to appoint attorneys to represent developmentally disabled or otherwise incapacitated persons is apparently a persistent problem in Massachusetts.

In his message on Friday, Larsen stated that appointments of attorneys in guardianships are “made as needed” and requested from lists that the CPCS provides to the probate court. I asked Larsen via email how these lists are compiled and whether the attorneys are recommended by the Department of Developmental Services.  Larsen said he will be out of the office until September 19 and will respond to my question at that time.

It has been more than six months since Andy McDonald’s attorney in his guardianship case resigned, and no one has yet been appointed to replace that previous attorney, according to Andy’s parents.

In addition, no up-to-date, independent clinical evaluation of Andy, who is intellectually disabled, appears to have yet been done. Such an evaluation has long been advocated by Andy’s parents, Stan and Ellen McDonald, and by the McDonalds’ local legislators and COFAR.

We’ve written about the McDonald case many times already, but it seems that every time we check in on the case, there has been some new development that works to the disadvantage of Andy and his family.

As we’ve previously noted, Andy’s parents, Stan and Ellen McDonald have been trying to overcome a devastating and factually inaccurate probate court ruling from a decade ago in which a judge concluded that Andy is so dangerous that he must be banned for life from ever returning to his hometown of Sherborn, where Stan and Ellen still live.

Stan is now 81 and Andy is 49, and Stan is not sure how much longer he will be able to visit Andy in his group home in Northborough. Stan and Ellen maintain that Andy is not dangerous and should be allowed supervised visits home. They note that even John Hinkley, who shot President Ronald Reagan in 1981, was permitted to leave institutional care last month and go back home to live with his mother, based on updated clinical evaluations.

Yet, none of those factors appears to have had any effect on the way the probate court system and the Department of Developmental Services continue to treat Andy and his family. Andy continues to be denied visits home; Stan and Ellen are rarely even informed about major events or issues regarding Andy’s guardianship; and as I noted, the Middlesex County Probate Court has failed even to appoint an attorney to represent Andy, as required by law.

The state’s Uniform Probate Code (M.G.L. c. 190B, s. 5-106) states that the probate court must appoint an attorney for a developmentally disabled or otherwise incapacitated person in a guardianship case if such an appointment is requested.

Last March, when Stan and Ellen arrived at the Middlesex Probate Court to attend a hearing held to appoint yet another third-party guardian for Andy, they were told that Andy’s court-appointed attorney in the case had resigned as of that day.  While that DDS-recommended attorney had also not advocated for home visits, at least Andy was technically represented legally in the case.

During a break in that March 17 hearing, the then attorney told Stan that she would work with Andy’s new guardian to ensure that a new, “experienced” attorney was appointed as soon as possible to replace her. Stan said this week that as far as he knows, that hasn’t happened.

On August 1, Stan contacted the Committee for Public Counsel Services (CPCS), the state’s public defender agency, for help in getting an attorney appointed for Andy, and was told that same day by an administrator there that the organization would inquire about “getting a successor counsel appointed.”  He said he has not heard anything further about the matter.

Since Stan and his former wife voluntarily relinquished their guardianship of Andy in 1986 as part of a custody battle, Andy has lived under a series of court-appointed guardians.  Like many people who lose or fail early on to secure guardianship of developmentally disabled members of their families, Stan and his current wife, Ellen, have been repeatedly stymied in their efforts to obtain that guardianship.

As a result, the courts and DDS view Stan and Ellen as having no no legal standing to request a clinical evaluation of Andy or anything else relating to the case. For years, they have had to watch helplessly as court-appointed guardians, who have hardly known Andy and rarely visited him, have made major decisions about his care.

The need for an up-to-date, independent, clinical evaluation

In light of the 2006 probate court decision that concluded that Andy was dangerous, Stan and Ellen believe an independent clinical evaluation is the only way to bring about the approval of home visits for Andy.  In fact, it’s not clear that any clinical evaluation was done by DDS when Andy’s latest guardian was formally appointed earlier this year.

The Uniform Probate Code requires that a petition filed for a new guardianship of a developmentally disabled individual include a “clinical team report” done within the previous 180 days. Stan said he asked for a copy of that clinical team report and was told by Andy’s DDS service coordinator that it was confidential and that he would not be allowed to see it.

Stan added that if a clinical team did in fact evaluate Andy within the past year, such a team never sought either his or Ellen’s input in that evaluation.  Yet, as Andy’s parents, Stan and Ellen do appear to have at least some legal standing in Andy’s guardianship case, even if they aren’t his legal guardians.

In a recent Supreme Judicial Court case (Guardianship of B.V.G.), the high court ruled that anyone interested in the well-being of an incapacitated individual in a guardianship case is considered under the Uniform Probate Court to be an “interested person” in those proceedings.  As such, they should be afforded certain rights, such as visitation rights.

Moreover, the court in the B.V.G. case specifically noted that the probate code requires that an incapacitated individual’s changed behavior and “expressed desires” be considered in decisions made by their guardians.  Not only should a guardian consider the incapacitated person’s expressed desires, but the guardian has a duty to immediately notify the court if the person’s “condition has changed so that he or she is capable of exercising rights previously limited.”

Andy has expressly stated to his family and in open court his desire for home visits; and his behavior has reportedly been exemplary for more than a decade.

This leaves us with a number of questions. Has Andy’s new DDS-appointed guardian been working to keep the court informed about Andy’s current behavior and expressed desires, and has she pushed for an independent clinical evaluation of Andy?  Most immediately, why hasn’t a new attorney been appointed to represent Andy?

The lack of legal representation and an independent clinical evaluation are just two of the many ways in which the system appears to have continued to fail Andy and his family just as it continues to fail countless other individuals with developmental disabilities and their families.