(Cross-posted from The COFAR Blogsite)
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.
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.
The New Eugenics is a hideous form of discrimination and marginalization. Why should voters trust the government that throws away their family members rather than providing what were once core services? Government does less for ordinary people, in my opinion and experience, every year while societaln resources are gobbled up by plutocrats and endless war.
The only valid reason I can think of for cutting off all contact like this is if the people in question posed a danger to the patient.
The DDS guardian said that when Chelsea’s father and sister were allowed to visit her on very limited occasions, they became emotional and cried. This allegedly got Chelsea upset after her father and sister had left, and she allegedly exhibited psychotic symptoms. No evidence was put forward as to how an emotional meeting with her family would or could produce such symptoms.
I agree that the only reason for cutting off contact would be if the visitors posed a danger to the patient. I listened to the recording of the probate hearing referred to in this post, and I heard no testimony that anyone who visited Chelsea posed a danger to her.
To deny even the pleasure of family is to place Chelsea into a situation more emotionally impoverished and hopeless than Fagan’s brats in Oliver! Shameful. I would call Oliver! a prophetic play for our time, and all too close to the lives of today’s poor and our legions of thrown away children and legal orphans. Our state creates an average of 800 legal orphans every year, most of whom age out with…nothing…from the state.
the mentally ill and developmentally disabled. It’s just done under the guise of enlightened progress. One day, it will be seen for what it is.
My beloved and I had gone to a lawyer for mutual POA, Health Care Proxy, etc. Included in his work was a mutual HIPPA disclosure form. It gives us the right to look at one another’s medical records, and get copies if we want them.
Let me offer a situation – I know a woman caring for her increasingly disabled mother; she is disabled herself. She went to a facility and her mother was bruised and fearful. Daughter asked for medical records and was told she could not view them as the Proxy had not been invoked and her mother is entitled to privacy. BUT – the doctor HAD invoked the proxy at that time. She asked for the records again. The facility said that she needed proof that he had, despite it being noted on the chart. Doctor wrote a letter. Weeks later, she finally got the records, and they indicate that serious mistakes, assumption of a diagnosis which proved wrong, etc., all contributed to her mother’s decline.
But what if the proxy had NOT been invoked? The facility would have been able to bury its mistakes in the name of protecting confidentiality.
IF appropriate, it would be wise to have another person who is able to get your records on your behalf, even if you are not entirely incapable. Many assume that the proxy and other such documents give the person access, and they do not.
When reading this story, I could not help thinking that had the family drawn up such a document, it would not have been superceded by a change of guardianship, and they would have some recourse to get information on their child.
does work in many cases, although, as I understand it, an individual essentially appoints someone as their health care proxy before they become incapacitated. It’s not clear to me that an intellectually disabled individual like Chelsea Barr could legally appoint someone, such as a parent, as her health care proxy.
That said, I think this case demonstrates that the current guardianship system is broken and doesn’t serve the needs or interests of families in many cases. Family members are frequently marginalized as the state uses the probate system to take over and run the lives of incapacitated persons.
At the very least, the state Legislature needs to pass a perennial bill that requires that family members be presumed to be suitable guardians for incapacitated individuals. That would be a first step in changing attitudes regarding guardianship, particularly at the probate court level.
But overall it is worth considering.
If the state us insisting that a person IS competent for their own purposes, then that is the time to consider such a document. It does not expire, and if a case worker says a person is competent then it us valid, even if they declare later that the person is no longer competent in order to assert guardianship. You work with a lot of people who might be able to use this tool.
And bonus points- since HIPPA is a Federal law, it is also effective out of state or while travelling domestically. If you are in a car crash in New York, and your designee is getting the run around on information, it opens your files. It also does not depend on next of kin.
health care proxies apply more often to people who are elderly and who are in danger of losing their legal competency than to people who are intellectually disabled, which is a condition that manifests itself early in life. If someone is found to be intellectually disabled and in need of a guardian, they would be considered incapacitated and therefore, I believe, would not be legally capable of signing over a health care proxy.
It seems health care proxies might be workable for people who have mild levels of intellectual disability and aren’t considered incapacitated. In any event, I think the recent B.V.G. Supreme Judicial Court decision should give family members the right to at least some more medical information than they often get in these cases.