COFAR blog

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, and her father, David, and her sister, Ashley. We are withholding the woman’s name.

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.)

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. Since the beginning of this year, DDS has not even informed David or Ashley as to where she is living.

COFAR has asked DDS Commissioner Howe to restore David and Ashley’s contact with the woman, 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 the woman 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 their family member.

“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 their family member 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 his daughter.

As COFAR has reported, a DDS attorney and the disabled woman’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 his daughter’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 his daughter when she previously resided with him, and a separate speculative statement that David and Ashley wanted to visit her out of “a sense of guilt.”

In addition, hearsay statements were made in the hearing by both Dorothy Wallace, the woman’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 his daughter he would become her guardian and would take her home soon. That reportedly made her 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 the woman. 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 the woman, 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 the woman 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 their family member.

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 the woman’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 the woman’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.

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 the woman by her father, David, and sister, Ashley. COFAR is withholding the woman’s name.

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

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

In the wake of allegations that the woman had been sexually assaulted over a two-year period by an alleged boyfriend of her mother’s, the woman 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 the woman, 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, the woman’s then 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 the woman’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 the woman when she was 12 years old, and a separate speculative statement that David and Ashley wanted to visit the woman out of “a sense of guilt.”

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 the woman 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 the woman’s permanent guardian.

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

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

Wallace’s testimony about what David might have said to the woman appears to be hearsay, however. David denied that he ever promised his daughter he would immediately take her home from the hospital. None of the clinicians who reportedly overheard David making that promise to his daughter 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 the woman to have psychotic symptoms. Wallace repeatedly testified that her intention was to reunite the family once the woman had been clinically stabilized. Yet, David and Ashley remain barred from any contact with her more than a year later.

In what was perhaps an unintentionally telling admission about the level of isolation to which the woman has been subjected, Wallace testified at one point that she was surprised to find out that an aunt of the woman’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?”

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 the woman 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 no evidence was given to support such an assertion.

There was no testimony given at the hearing that implicated David or Ashley in any abuse of the woman.

Whitbeck also said in her opening statement that “it is understandable that the family wants to be involved with the woman, 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 his daughter.

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 (her sister) needs is family. I agree that at some points (the woman) 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 his daughter 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 his daughter. Rather, he said, he was trying to reassure her that one day she would be coming home.

Similarly, Whitbeck stated that she understood Ashley had been overheard telling the woman 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 her sister said she believed had been making fun of her. “I would never tell (her sister) 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 the woman to a doctor for anti-psychotic medications only once. This also appears to be hearsay. Ashley told COFAR that David took the woman for medications and to doctors’ appointments “multiple times.”

A lack of familiarity with the woman and her family

Testimony provided by Wallace indicated either a lack of familiarity with the woman 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 the woman’s guardian, and why an offer from a family friend who knew the woman well was apparently disregarded.

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

After having been removed from her mother’s care, the woman 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 the woman 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 the woman 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 the woman’s anti-psychotic medications there. Under questioning, Wallace also said she was unaware that the woman had a sister in addition to Ashley.

Asked how many times she had visited the woman 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 the woman’s ISP (Individual Support Plan), while another visit was to meet an aunt of the woman’s who was allowed to visit her 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.

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 of 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.