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DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

May 14, 2018 21 comments

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban.  Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.

In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.”  But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

We have previously noted that we have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.

DDS regulations, which give DDS clients the right to receive visitors, specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

Enforcement of the ban raises further questions

Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.

Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.

In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.

As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.

Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.

Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.

Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.

“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.

Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.

“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.

During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”

On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”

On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.

Tens of millions of dollars in government funding

As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.

TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.

According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017.  Kevin Stock, TILL vice president, received $229,988 in total compensation.

I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.

I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.

TILL’s financial and business practices have in the past been the subject of controversy.  A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.

In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.

This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.

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Donald Vitkus, inspirational survivor of the Belchertown State School, dies at 74

January 26, 2018 9 comments

Donald Vitkus, a survivor of the former Belchertown State School, whose life became an inspiration to many in the disabled community, died Wednesday of complications from a brain tumor.

Vitkus was the subject of a book published in 2016 by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for families and persons with developmental disabilities in western Massachusetts.

Orzechowski’s book, “You’ll like it here,” chronicled Vitkus’s childhood at Belchertown in the 1950s, and his life afterwards in which he dealt with lasting emotional effects of his experiences in the institution. After an initial failed marriage and a literal search with his son for his past among Belchertown records, he found his calling in recent years as an advocate for persons with developmental disabilities.

Vitkus’s wife, Patricia, said there will be a memorial service in Massachusetts at a later date.

Vitkus was sent by a foster family to Belchertown in 1949, when he was six years old.  He had a tested IQ of 41 and was labeled “a moron” in the state school records, according to Orzechowski’s book.  In fact, that assessment of Vitkus cognitive ability and similar assessments of many of his peers at Belchertown proved to be wrong. He and many of his fellow “inmates” had to use their wits to survive there.

Donald Vitkus photo4

Donald Vitkus speaking at a recent event in his role as an advocate for people with developmental disabilities

In his book, Orzechowski described how Vitkus first approached him in 2005 following a book signing for “Crimes Against Humanity,” a detailed account by the late Benjamin Ricci of conditions at Belchertown and the other institutions prior to the 1970s. Ricci launched the class action lawsuit, Ricci v. Okin, in that decade that resulted in major improvements  in the care and conditions in the facilities.

In a post yesterday on Facebook, Orzechowski said that when he first met Vitkus at that book signing, Vitkus was then a 62-year-old student at Holyoke Community College, earning a degree in human services.

Vitkus told Orzechowski that he had grown up at Belchertown and was looking for someone to help him write his story. “I had no idea how important this man would become in my life,” Orzechowski wrote yesterday. 

“You’ll like it here” describes what were at the time horrifying conditions at Belchertown, and the treatment of the residents as prison inmates who could be abused with impunity.

When Vitkus refused at one point to take antipsychotic medication that was then routinely given to everyone, an attendant tried to jam the pills down his throat.  Vitkus bit off the attendant’s finger and was placed in solitary confinement for 34 days as punishment.  He noted to Orzechowski that the medication was used to keep the residents docile.

Orzechowski also described how the introduction of a television set, donated by a parents’ group,  opened Vitkus’s mind to the outside world, but also raised troubling questions for him, particularly about things such as the civil rights struggles of the late 1950s. From the book:

“Why were colored people treated like that?” he wondered.  “Why was anyone treated like that? Why did places like Little Rock, Montgomery, and Belchertown exist? Where was justice?”

In 1960, Vitkus was “paroled” from Belchertown at the age of 17, after graduating from the sixth grade at the school. He was sent to a program run by the Catholic Church called Brightside. Later, he enlisted in the Army and was sent to Vietnam where he lost a buddy who was killed in a firefight.

After his return from Vietnam, Vitkus got married to a young woman whom he’d met while he was a resident at Brightside. He also took night classes at a local high school and received a high school diploma.

But while Vitkus and his wife had two children, he found that he was incapable of expressing affection for her or for his children.  Eventually, his wife filed for divorce.

Vitkus  later reconnected with his son, Dave, who became a police officer in Northampton, and the two of them went on an exhaustive hunt together for information about Vitkus’s past.  That search took them to Belchertown, which was then in the final process in the early 1990s of closing.

At the age of 52, Vitkus remarried, earned an associate degree in human services at Holyoke Community College, and began a new career in caregiving to people with developmental disabilities.

Orzechowski offered some remembrances of his experiences with Vitkus in just the past year during a series of book signing events in western Massachusetts. One of those events was at Whole Children, an agency established in Hadley by mothers of developmentally disabled kids.

As Orzechowski described it:

It was a terrible stormy night last January—i thought it might be cancelled—but a sizeable crowd still showed. I saw one woman in the audience sitting with her son, probably middle school age. She later told me that her son is seldom communicative, but on the way home in the car he couldn’t stop talking about Donald and that he wanted to grow up to be like him, speaking out and advocating.

 At another event at a bookstore in Westfield, Orzechowski said:
I had watched a woman in the audience, clearly moved. When Donald called for questions following our presentation, he asked, “What brought you here, ma’am?” — a question he often asked. The woman was so emotional she couldn’t speak. There was a long silence, and Donald went to her and embraced her. This from a man who at one time couldn’t stand to be hugged because it reminded him of abuse and restraints.
At a coffee shop:
Donald and I had dropped off some books to be sold at Gail’s (my wife) hairdresser’s shop. Donald and I went next door for coffee, and were at a table talking. A woman (Darlene) who had been sitting near us (she was wearing an apron, on break) said she couldn’t help overhearing, and introduced herself. She had also been a patient at Belchertown as a child. She and Donald started reminiscing, and I went out to my car to get a book to give to her. We continued talking after I gave her the book, and before she left I told her that there were several pictures in the back of the book. She was still standing at our table, and when she opened to those pages, her hands started to tremble. It was extremely moving.

In his Facebook post yesterday, Orzechowski described Vitkus as “a man of courage, justice, integrity, resiliency, humor, and humility. He was a remarkable advocate for the rights and care of people with mental disabilities.”

Orzechowski added that, “I am both privileged an honored to have shared his life story, and to have become a very close friend. We had quite a journey together.”

New Yorker article on guardianship abuses has familiar ring

November 8, 2017 Leave a comment

An article last month in The New Yorker magazine on abuses in the guardianship system in Nevada is beyond disturbing, and its findings echo many of the concerns we have raised about the dysfunction of the Department of Developmental Services and probate court systems in Massachusetts.

The New Yorker article is primarily about abuses by guardians of the elderly, and it gets into an issue we haven’t fully explored, which is the financial exploitation of people who are represented by professional guardians. But we think many of the article’s points are relevant to the system involving DDS-paid guardians in Massachusetts.

As we have seen in several cases in Massachusetts, the DDS-probate guardianship system has trampled over the rights of family members of developmentally disabled persons, including sharply limiting or even eliminating their right in some cases to contact or visit their loved ones. That is also apparently a feature of the system described in the New Yorker piece.

As is the case in Massachusetts, the primary problems with the system exposed by the New Yorker article appear to lie with abuses by attorneys or other professionals who are appointed as guardians of incapacitated individuals. In many of these cases, family members, who would be better suited to be the guardians, are passed over by the courts and excluded from consideration for that role.

The article and previous reporting by The Las Vegas Review-Journal disclose how two professional guardians named April Parks and Jared Shafer used the probate system in Nevada to become court-appointed guardians of hundreds of people who were mostly elderly, and then took control of their bank accounts, estates,and property.

It isn’t clear whether that type of financial abuse has happened to developmentally disabled persons in Massachusetts, but there appears to be a potential for it. In 2008, an investigative article in The Boston Globe found that some 900 DDS clients in Massachusetts received little or no benefit from trust funds containing some $30 million.

Instead, the money was largely siphoned out of the accounts to pay bank management charges, legal bills, and fees charged by the Massachusetts Probate and Family Court system, “which has long neglected its obligation to ensure the funds are expended for the benefit of some of the state’s most helpless citizens.”

In July, COFAR reported that the state’s system of paying attorneys and corporate providers to serve as guardians of DDS clients is poorly overseen and that the system appears to give professional guardians an incentive to do little work representing individual clients while taking on as many clients as possible.

Families have also been victimized financially by the Massachusetts system. As one family member of a DDS client in Massachusetts described the attitude of the various guardians and clinical and court professionals that she dealt with in the DDS-probate system, “it was just a given that our checkbook was theirs.”

The New Yorker reported that without their families even knowing it, in many instances,  elderly people were removed from their homes by Parks and Shafer who then sold their property and pocketed the money. Parks was indicted last spring on theft and other charges after the local media finally ran stories on the issue.

The New Yorker article further stated that when family members tried to contest the guardianships or become guardians themselves, “they were dismissed as unsuitable, and disparaged in court records as being neglectful, or as drug addicts, gamblers, and exploiters.”  That sounds familiar to us because it is what we’ve seen in a number of cases in Massachusetts.

Another revelation in the article that sounded familiar to us was that the professional guardians often would not inform families about the care and conditions of their loved ones, and often prevented family members from being able to visit them. The director of an assisted-living facility into which many of the wards were placed, is quoted as saying that families were “devastated that they couldn’t know if the residents were in surgery or hear anything about their health. They didn’t understand why they’d been taken out of the picture. They’d ask, ‘Can you just tell me if she’s alive?’ ”

In one case, an elderly couple was moved with little notice by April Parks to a new assisted-living facility. When their daughter tried to visit them there, Parks refused to let her see her parents. According to the article, Parks later wrote that she had told the woman that “she was too distraught to see her parents, and that she needed to leave.” When the woman refused to leave the facility, Parks had the police called who then cited the woman for trespassing.

This sounds very similar to the reasoning given for keeping David and Ashley Barr from visiting David’s daughter, a developmentally disabled woman who has been ordered kept from their contact by a DDS-paid guardian since November 2015. The Barrs were supposedly too emotional when visiting her even though they said the reason they were emotional was because they often found her to be in a heavily drugged state during the visits.

Another family was prevented from talking to their daughter on the phone for a similar reason.

Another revelation in the New Yorker article that had a familiar ring was a description of the longstanding inaction of investigative authorities when presented with evidence of abuses in the guardianship system.

As we’ve said many times, a first step in reforming the DDS-probate system in Massachusetts would be for the Legislature to enact H.887,  a bill which would establish a presumption that parents of a developmentally disabled person are suitable guardians for that person.

The bill would thus make it harder for parents to be bypassed by probate judges who tend to side with DDS, which often favors the appointment of professional guardians in the place of families.

H.887, however, has been stuck in the Judiciary Committee since last January despite the fact that there appears to be no public opposition to the measure. It has been re-filed by Representative David Linsky in every Legislative session since 1999, but has never gotten out of the Judiciary Committee to our knowledge.

We’re hoping, as usual, that this year will be different. But despite a supportive statement last spring from Representative Claire Cronin, House chair of the Committee, that the bill was her “top priority,” the measure hasn’t moved forward in the current legislative session.

It’s time for the Judiciary Committee to finally act on H.887.  The numbers to call there are:

(617) 722-2396 for the office of Rep. Cronin, House chair; and/or

(617) 722-1280 for the office of Senator William Brownsberger, Senate chair.

As noted, this bill is only a first step. We are continuing to urge others in the Legislature as well to step forward to address the underlying systemic problems in the DDS and probate court systems.

Isolation of developmentally disabled woman continues after more than a year and a half

July 5, 2017 2 comments

It has been a year and seven months since David Barr and his daughter, Ashley, were last informed by the Department of Developmental Services of the whereabouts of David’s other daughter, a young woman with a developmental disability and mental illness.

The 29-year-old woman, whose name is being withheld for privacy reasons, is being kept in an undisclosed residence. All contact with her by her father and sister was cut off for unclear reasons by a DDS-paid guardian in November of 2015.

Although Dorothy Wallace, the DDS guardian, said in August 2015 that her goal was to allow the woman to have family contact, it still hasn’t happened for reasons that have never been revealed to David or Ashley. For unknown reasons, the only family member who has been allowed to visit the woman is an aunt who has apparently agreed not to reveal the woman’s location to the woman’s father or sister.

In an email last week, Ashley Barr told COFAR that her father has personally filed in the Essex County Probate and Family Court to intervene in the case and to seek permission to visit his daughter. But to date, he has not heard from the court.

The probate court has not issued any orders barring visitation with the woman. The denial of virtually all family contact appears to be a decision of the woman’s guardian and possibly DDS.

The Barrs have been unable to afford the cost of hiring a lawyer to pursue their case in probate court. As we have reported in another case, it is extremely difficult to prevail in any probate court proceeding in Massachusetts if you are not a legal guardian or appear without a lawyer.

David and Ashley have contacted their local state legislators, but have gotten little or no help from them. COFAR has attempted to intervene with mainstream media outlets and the legislators in support of visitation for David and Ashley, also to no avail.

Ashley and David Barr

David and Ashley Barr

As we reported in January,  the Boston-based Disability Law Center temporarily intervened in the case that month to ask a state-appointed attorney who is representing the woman to support family visits if the woman wished that. However, nothing apparently resulted from that effort.

The attorney, Melissa Coury Cote, told COFAR in March that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request.  She provided no reason to us for opposing family visits other than to say that the woman had not specifically asked her to allow visits from her father and sister.

However, Ashley Barr said that her sister recently called her father on two occasions and said she missed her family and wanted to see them. The calls were apparently unauthorized. Ashley and David don’t know whose phone the woman used to contact them. They are concerned the woman may have gotten in trouble for making the calls.

Coury Cote had previously been appointed by the state Committee for Public Counsel Services (CPCS) to represent the woman on guardianship matters.  Under state probate law, incapacitated adults are entitled to free legal representation although their family members are not entitled to that.

COFAR has reported on a number of cases in which DDS-paid guardians have imposed severe restrictions on family contact with persons in the DDS/probate court system; but the Barr case may be the most extreme of those cases in that in none of the other cases has a DDS client been kept in isolation for such a long period of time, and in no other case has their family not been informed of their whereabouts.

COFAR first appealed to DDS Commissioner Elin Howe last October to seek permission for the Barrs to visit their family member, but Howe declined to do so.  In early April, COFAR sent an email to Howe, asking whether a timetable existed for ever reuniting Ashley and David with the woman. Howe did not respond to the query.

According to a transcript of an August 2015 court hearing on the case, Wallace and other DDS officials complained that David Barr was excessively combative in dealing with them and that David and Ashley became overly emotional when they had been allowed to visit the woman prior to the cutoff of all contact with her.

While being combative with DDS over the care provided to a loved one can occasionally result in restrictions placed on family contact, we know of no other case in which all such contact was removed for this long a period of time.

CPCS attorney was reportedly told to keep the family informed

John Byron, a friend of David Barr’s, who attended a probate court hearing on the case with David in March, said the probate court judge seemed to be moved when David said he had been prevented from any contact with the young woman and that no one was providing him with any information about her. According to Byron, the judge then told Attorney Coury Cote that she should communicate with the family and that she (the judge) didn’t want the family “kept in the dark” about the case.

Coury Cote told COFAR the judge had asked her during the hearing only to “take a few minutes to speak with father.” She denied that the judge had ordered her to keep David Barr informed about the case.  At one point, Coury Cote also said that the Barrs were “not entitled to information” about their family member’s whereabouts.

We believe, however, that in light of a Supreme Judicial Court ruling last year involving the guardianship of a woman known as B.V.G. , David and Ashley Barr should be considered by the probate court to be “interested persons” in the welfare of their family member. As such, they are entitled to information about her whereabouts and to be afforded visitation and other rights.

CPCS declines to review the attorney’s conduct

In March, we appealed to Mark Larsen, director of mental health litigation with the CPCS, asking for an investigation of Coury Cote’s conduct in the case. Larsen responded within two days of our appeal to state that the attorney had no obligation “to follow your directions, those of your client (apparently Ashley and David Barr) or of the DLC. Her only obligation is to her client and her client’s wishes.” He stated that “if the family wants a change in visitation, they should consult counsel of their choosing.”

For the record, neither David nor Ashley Barr are clients of COFAR. COFAR is advocating on behalf of them, but our organization does not charge for such advocacy.  Our funding comes strictly from donations made by affiliated organizations and from families.

Larsen also stated that it “appears” that Coury Cote “consulted with her client” in the case.

I wrote back to Larsen to clarify that I had not suggested, or meant to suggest, that Coury Cote should follow our or the DLC’s directions, but that it appeared to us that she “may not have fully ascertained the wishes of her client.” I also stated that Larsen’s comments implied that he did not know for a fact that the Coury Cote had consulted with her client, and that he was only assuming that to be the case.

I noted further that while the CPCS’s Assigned Counsel Manual states that an attorney should “act as a zealous advocate for the client,” the manual also states the attorney should insure “that proper procedures are followed and that the client’s interests are well represented” (my emphasis).

Larsen emailed back a two-sentence reply, badly misspelling my name and saying he had nothing to add to his prior response.

It is frustrating to us, although perhaps not surprising, that the DDS/probate court system seems so often to function against the interests of individuals and families caught up in it. One key reason for this appears to be that there is little or no accountability when professionals in the system act contrary to the interests of people who are powerless and vulnerable.

We always thought the role of legislators and the press was to represent the powerless in society. I think we’re all learning that is no longer the case.

We can only hope that when the Barrs finally do get their day in court, the judge will acknowledge the rights they have been denied and will consider the apparent wish of the young woman involved to see her family again.

In the meantime, we would urge people to call either the governor’s office (617-725-4005) or the DDS commissioner’s office (617-727-5608), and ask them to re-establish family contact in this case. If you do so, please let us know about it.

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.