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Father and sister will finally be allowed contact with disabled woman as 3-year DDS family-separation order is eased

November 13, 2018 2 comments

After three years, a state employed guardian is at least partially lifting a ban on family contact with a developmentally disabled woman, and is allowing the woman’s father and sister to visit her.

In a November 6 email to Ashley Barr, the disabled woman’s sister, Dorothy Wallace stated that she was granting permission to Ashley and to David Barr, the woman’s father, to visit the 30-year-old woman for the first time since November 2015. The woman has been diagnosed with an intellectual disability and mental illness.

Wallace has never clearly explained the reason for her family separation policy, which has nevertheless been upheld by the Department of Developmental Services. DDS pays Wallace to serve as a guardian to the woman and to other departmental clients.

Chelsea, David, and Ashley Barr

David and Ashley Barr. They have been prohibited, for unclear reasons, from contact with their developmentally disabled family member for the past three years.

In her email, Wallace wrote that she would now allow visits because the woman’s mother, Nancy Barr, has been sentenced in a criminal case involving the sexual assault of the disabled woman by Nancy Barr’s boyfriend, John Leone. Nancy and David Barr have been divorced since 2003.

Nancy Barr pled guilty on November 6 to sexual assault charges and was sentenced to two years in prison. Leone pled guilty to similar charges in May and is serving a three to five-year prison term. The sentencing of both Leone and Nancy Barr had repeatedly been delayed during the past year.

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

Neither David nor Ashley, nor any other members of the family were involved in the abuse of the disabled woman or were ever charged in the case.

Yet, for the past three years, Wallace prohibited all members of the family other than an aunt from having any contact with the woman, and had not even informed the family as to where she has been living. We are withholding the woman’s name because she was a victim of sexual assault.

Ashley, whose first visit with her sister following the lifting of the ban was today at a DDS area office, said her sister appeared alert and happy to see her and her father. Regular weekend visits will be scheduled for the foreseeable future at a group residence in Haverhill in which her sister is now living.

Ashley also said she intends to apply in court to become her sister’s guardian and that David is supporting her in that.

Ashley told COFAR that in the months prior to the November 2015 ban on visitation, her sister appeared drugged when they were allowed to visit her, and, in one instance, did not appear to have been bathed.

COFAR has repeatedly asked Wallace and DDS for an explanation for the family contact ban specifically on David and Ashley. In an email to both Wallace and DDS Commissioner Jane Ryder on November 9, I also asked what the sentencing of Nancy Bar, in particular, had to do with the family separation policy.

David and Ashley had been among the most involved family members in the woman’s life and care, and have led the family’s effort to resume contact with the woman. To date, neither Wallace nor Ryder have responded to our queries about the case.

In her November 6 email, Wallace implied that she is stepping down as the woman’s guardian, stating that, “With the completion of the sentencing (of Nancy Barr), I have fulfilled my obligation to (the disabled woman) and as promised to Ashley and Mr. Barr they can now coordinate visits with (the woman).”

We have never seen another case in which such a complete and lengthy prohibition on contact was imposed on family members who were not charged or, as far as we know, accused of any serious misconduct with regard to a disabled individual. As we’ve said before, we think this ban has been enforced in 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…”

We think there is a fairly universal consensus that family separation in social services should be imposed only as a last resort, and then should be used sparingly and for as short a time as possible. If family separation is imposed, authorities should be transparent about it and communicate as much information as possible to those family members affected. In our view, none of those criteria were met in this case.

During the past three years, different reasons have been given to the Barr family for the separation policy:

  • In an August 2015 hearing in probate court, Wallace testified, according to the hearing transcript, that she was imposing restrictions on contact between the woman and her father and sister because David and Ashley became overly emotional when they had been allowed to visit her.
  • Wallace contended that those visits, which took place in hospital settings after the arrests of John Leone and Nancy Barr on the assault charges, caused the woman to exhibit psychotic symptoms afterwards.
  • Last February, Ashley was told by DDS General Counsel Marianne Meacham that there was concern on someone’s part that a visit from David and Ashley would somehow make the woman “lose focus” in preparing to testify in the trial of Leone and Nancy Barr. Meacham told Ashley that visits would be permitted once the trial, which was originally scheduled to be held in April, was over.
  •  Despite Attorney Meacham’s contention that the ban on family contact was related to the then ongoing criminal case, a spokesperson for the D.A.’s office told COFAR in February that the D.A. was not responsible for the ban, and that it had been ordered by Wallace.
  • And despite the assurances given to Ashley, visits with her sister were not scheduled even after Leone pled guilty to sexual assault last May. David and Ashley were now told they would not be allowed any contact with the woman until Nancy Barr was sentenced in the case. That sentencing occurred only last week.

DDS officials appeared to be biased against the family

As COFAR reported, Wallace and other DDS officials made a number of statements about Ashley and David during the August 2015 probate court hearing that appeared to indicate a bias against them.

Many of the statements appeared to be hearsay or to lack  foundation, including Wallace’s statement that hospital clinicians told her the woman exhibited psychotic symptoms after visits from David and Ashley. At the time of her testimony, Wallace had been appointed as the woman’s temporary guardian.

The court hearing concerned a request by David and Ashley that they resume regular contact with the woman and that David be appointed as her permanent guardian. The judge, however, ruled instead in favor of the appointment of Wallace, the candidate recommended by DDS, as the woman’s permanent guardian. David Barr had tried without success to gain guardianship of the woman after his divorce from Nancy Barr in 2003.

Despite the judge’s ruling in 2015, the court does not appear ever to have issued an order banning any members of the family from having contact with the woman.

Ashley acknowledged she and her father did become emotional during visits with her sister prior to the complete visitation ban in November 2015 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 (her sister), I mean how could we not?” Ashley said in an interview in 2016. “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 the woman, Ashley said it appeared she had not been bathed.  Ashley said she 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.

Little information and little help from legislators

After the woman told a family friend about the alleged abuse in 2014, the friend reported the matter to police, and the woman was immediately removed from her mother’s care. She was apparently placed in a shared living arrangement, 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 their family member’s whereabouts.  Ashley and her father said that virtually no information was provided to them for the first month after her 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 she was admitted, reportedly after psychotic episodes.

David and Ashley said they tried for months after the ban on further contact was imposed to get answers from DDS and from Wallace, and got little or no response from them. They also contacted their local legislators and got little help, and even went to the media, but were unable to get any news outlets to report their story.

Ashley said the ban on contact was so complete that when she found out in May 2016 that she was pregnant, Wallace denied her request that her sister be allowed to come to the baby shower. She said Wallace also told her that her sister would not be informed that she was pregnant.

One aunt allowed visits, another blocked

For unknown reasons, the only family member who has been allowed to visit the woman has been a maternal aunt who apparently agreed not to reveal the woman’s location to Ashley or David. The aunt told COFAR, however, that she thought David and Ashley should be allowed to visit the woman.

In the meantime, another aunt of the woman’s as well as a family friend were blocked from visiting her.

In an interview with COFAR in August of this year, Susan Zeytoonian, a paternal aunt of Ashley’s, said she had accompanied Ashley to visit the woman shortly before Wallace banned all family contact. Zeytoonian said that prior to the removal of the woman from her mother’s care, the woman had frequently spent time at her house.

According to Zeytoonian, the woman was happy to see them during their 2015 visit and “came runnng down the hall.” She said she had not seen her niece since that visit.

The family friend who initially reported the alleged sexual abuse of the woman to police had initially been allowed to visit her. However, the friend told COFAR that when she tried to visit the woman at Tewksbury State Hospital in April 2016 on her 28th birthday, she was told that she 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.

Disability Law Center tried to find a solution in the case

In early 2017,the Boston-based Disability Law Center temporarily intervened in the case to ask a state-appointed attorney who is representing the woman, to support family visits if the woman wished that. However, that effort was not successful.

The attorney, Melissa Coury Cote, told COFAR in March 2017 that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request. Cote provided no reason 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 at the time that her sister had recently called her father on two occasions and said she missed her family and wanted to see them. The calls were apparently unauthorized. Ashley said she and her father didn’t know whose phone the woman used to contact them.

While we are glad that a step toward reuniting the family has finally been taken by Wallace and DDS, we remained concerned that the Department and its professional guardians do not appear to operate in accordance with the Department’s own regulations on the rights of its clients and their families.

This case, moreover, illustrates the need to make reforms to the DDS-probate court system that ensure that clients and families are treated fairly and their rights and wishes are respected. Among the reforms we have proposed are the following:

  • Passage of legislation requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.
  • The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the Department or from providers.
  • The provision of free legal assistance to family members whose guardianships are challenged by DDS.
  • A policy statement by DDS that the Department will make every effort to comply with the federal Developmental Disabilities Assistance and Bill of Rights Act, and, in particular, the statement in the law that individuals with developmental disabilities and their families are “the primary decision makers.”
  • Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.

Without reforms such as these, we are afraid cases such as this one will happen again and again.

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Movement to replace guardianship appears based on little research

November 7, 2018 3 comments

A juggernaut of support has been building in Massachusetts and around the country to replace guardians of persons with developmental disabilities with more informal “support networks” of advisors.

Yet, the growing movement behind “Supported Decision Making” (SDM) appears to be primarily ideological, and little research appears to have been done on the impact of SDM on disabled individuals and their families.

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.

Proponents of SDM claim that it restores the right of disabled and elderly persons who are under guardianship to make their own life decisions with help, if needed, from networks of supporters. That right has been overly curtailed by guardians, the SDM proponents maintain.

Even the United Nations Convention on the Rights of Persons with Disabilities included language in 2008 “that embraces supported decision-making and which is seen by some as requiring nations to adopt supported decision-making mechanisms,” according to a 2013 article on SDM in the Penn State Law Review.

Still, not everyone is convinced that all guardianships should be terminated, or that they should be replaced by SDM. As that same law journal article by Nina A. Kohn, Jeremy A. Blumenthal, and Amy T. Campbell, noted, “…despite much rhetoric touting its (SDM’s) advantages, little is known about how supported decision-making processes operate or about the outcomes of those processes.”

Without more information, the 2013 article stated,

…it is impossible to know whether supported decision-making actually empowers persons with cognitive and intellectual disabilities. Furthermore, there is reason to be concerned that supported decision-making might actually have the opposite effect, disempowering such individuals or making them more vulnerable to manipulation, coercion, or abuse.

COFAR has raised concerns about SDM, contending it could marginalize family members as decision makers in the care of their loved ones with developmental disabilities. COFAR has also raised a concern that SDM networks can potentially include service providers – a situation that would appear to pose a conflict of interest if the provider is also providing services to an individual for whom it is participating in an SDM network.

In Massachusetts, the state Senate included a provision in the state’s Fiscal 2019 budget last spring for a commission to study replacing guardianship in the state with SDM. (S.2530). While such a study would ordinarily be welcome, the proposed study commission under the budget legislation appeared to be comprised primarily of SDM supporters. And while the study was not included in the final state budget, its proponents will no doubt keep trying to insert a similar study commission in future budgets.   

The SDM study commission would have included representatives from the Arc of Massachusetts, the Center for Public Representation, and other SDM proponents, including Mass. Advocates Standing Strong and the National Association to Stop Guardianship Abuse.

COFAR would support a commission to study SDM. But it should be an impartial study, and not dominated by anti-guardianship organizations.

Massachusetts also appears to have been moving in the direction of SDM in recent years with the adoption of “person-centered planning,” a process that also appears to lack oversight and to have the potential to put much of the decision-making power over an individual’s funds into the hands of private companies.

Yet, even major legal organizations such as the American Bar Association appear to have made up their minds in favor of SDM; and like many other SDM proponents, the ABA appears to be basing its position on ideology rather than research or clinical standards.

In email exchanges with COFAR in September and last month, Dari Pogach, an attorney with the ABA’s Commission on Law and Aging, implied that a guardian may not be necessary even for some persons with severe or profound intellectual or developmental disabilities.

Pogach stated that the decision to replace an individual’s guardian with an SDM network should be based on the person’s ability make their own decisions. Yet, no clinical diagnosis or standard of cognitive ability is necessary to make that determination, she wrote.

The paradox of SDM

The view that no clinical diagnosis is needed in determining whether an individual is capable of making their own decisions appears to be linked to the ideological position of many SDM proponents that virtually all persons, no matter how cognitively impaired they might be, are capable of making life decisions.

Yet, in their Penn State Law Review article, Kohn et al. pointed out that:

…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes. (my emphasis)

Kohn at al. included the following quote from a 2009 discussion paper on SDM issued by the Office of the Public Advocate in Victoria, Australia:

Can a person be assisted through information, emotional support or in some other way to make their own decisions if they do not have, for example, an appreciation of the significance of the decision they are making or a reasonably consistent set of values? 

Lack of research on outcomes of SDM

In their article, Kohn et al. said they had found no research “evaluating the quality of decisions reached using supported decision-making.” Such research is needed, and should include whether a decision increases an individual’s welfare in some way, they wrote.

Similarly, Kohn et al. stated that there has been little or no research on the demographics of guardianship and SDM. It is unknown, for instance, how many people in the United States are subject to guardianship.

While researchers have estimated that approximately 1.5 million people in the United States are subject to guardianship at any given time, Kohn et al. stated, the actual numbers are unknown, in part, because many states fail to provide the types of records that would enable a national assessment.

Kohn et al. also stated that it is unknown what portion of persons subject to guardianship are persons with intellectual disabilities, and it is unknown what percentage of guardians are “public guardians,” as opposed to family members, friends, or other third parties. It can be reasonably assumed, they stated, that most guardians are not public guardians.

To that extent, it would appear to us that SDM is primarily aimed at replacing family members of persons with developmental disabilities as guardians.

Kohn et al. further noted that research is needed on who does best at helping a developmentally disabled person to reach a “beneficial decision.” Is it family members, friends, health-care providers, or others?

Our experience has been that family members make the best guardians, and, as noted, that there is a potential conflict of interest in allowing providers to assist developmentally disabled persons in making decisions.

In fact, Kohn at al. stated that:

…when we turn to more informal arrangements such as supported decision-making, which may occur in private and with less accountability, the potential for financial or other abuse likely increases. However, data do not seem available on the incidence of such abuse in the supported decision-making context. (my emphasis)

No distinction drawn between people with different levels of disability

The Kohn article raised an additional concern that although SDM is often seen as particularly likely to benefit persons with intellectual and developmental disabilities, “a fundamental concern with these demographic data (about SDM) is that it is unclear how representative they are of individuals with ID (intellectual disability).”

Yet, even the Kohn article did not appear to fully acknowledge or recognize that people with the same type of intellectual disability may have different reactions to SDM and to guardianship depending upon the level or severity of their disability.

For instance, the Kohn article suggested that research is needed to probe whether SDM might lead to “coercive discussion processes or even abuse that might vary with the principal’s age group or type of disability.” But the article did not question whether such variations might be due to a person’s level or severity of disability.

That is an important distinction, in our view, because it would seem that SDM might work well for persons with very mild levels of intellectual disability, but would not work well with people with severe or profound levels of that same type of disability.

In sum, we think legislators, courts, and other policy makers need to slow down when it comes to guardianship reform and think more carefully about how that should be accomplished. We have listed our own reform recommendations, which we think get at the root of the problems that guardianship does pose today.

Reform of the guardianship and probate system is needed, but that doesn’t mean the system should be replaced with something that hasn’t yet been sufficiently researched.

Committee airs testimony on sexual abuse of the disabled, but offers little indication of its next steps

November 1, 2018 3 comments

While members of a legislative committee heard testimony on Tuesday about sexual abuse of the developmentally disabled in Massachusetts, the state lawmakers on the committee gave little indication as to what they plan to do with the information.

COFAR was one of several organizations invited by the Children, Families, and Persons with Disabilities Committee to testify. The committee members asked no questions of any of the three members of COFAR’s panel, who testified about serious and, in one case, fatal abuse of their family members in Department of Developmental Services-funded group homes.

Children and Families hearing 10.30.18

Tuesday’s hearing on sexual abuse in the DDS system. The committee members asked no questions of COFAR’s panel.

COFAR President Thomas Frain, Vice President Anna Eves, and COFAR member Richard Buckley also offered recommendations to the committee, including establishing a registry of caregivers found to have committed abuse of disabled persons, and potentially giving local police and district attorneys the sole authority to investigate and prosecute cases of abuse and neglect.

The hearing drew some mainstream media coverage (here and here); but, while COFAR had alerted media outlets around the state to the hearing, most of the state’s media outlets, including The Boston Globe, did not cover it.

Committee asks no questions

Following the hearing, Frain said he was glad to get the opportunity to testify, but frustrated that the members of the committee seemed to lack interest in what he and COFAR’s other panel members had to say.

“It crossed my mind, were the committee members told not to ask any questions?” Frain said. “How divorced and disengaged is the Legislature that they can hear this testimony and not even have a follow-up question about an agency they’ve voted to fund?”

The hearing was the second since January involving testimony invited by the Children and Families Committee on the Department of Developmental Services system. The general public was allowed to attend, but not permitted to testify publicly before the committee in either hearing. The committee has given no information regarding the scope of its review of DDS.

COFAR has continued to ask for information from the committee as to the full scope of its review, and whether the committee intends to produce a report at the end of that review.

COFAR panel describes abuse and neglect

On Tuesday, Richard Buckley testified about his 17-year quest for answers to his and his family’s questions about his brother’s death in a group home in West Peabody in 2001. Buckley’s developmentally disabled brother, David, had previously been sexually abused in a group home in Hamilton, and was ultimately fatally injured in the group home in West Peabody.

David Buckley received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in the West Peabody residence run by the Department of Developmental Services. The temperature of the water in the residence was later measured at over 160 degrees.

David died from complications from the burns some 12 days later, yet no one was ever charged criminally in the case, and the DDS (then Department of Mental Retardation) report on the incident did not substantiate any allegations of abuse or neglect.

Richard Buckley urged the committee to take action to reform the DDS system. “If nothing is done, the next rape, assault or death, will be on you,” he said. “And we will remember that.”

Buckley also read testimony from another COFAR member, Barbara Bradley, whose 53-year-old, intellectually disabled daughter is currently living in a residence with a man who has been paid by a DDS-funded agency to be her personal care attendant. In her testimony, Bradley said the man initiated a sexual relationship with her daughter, and later brought another woman, with whom he also became sexually involved, to live in the same residence.

Anna Eves discussed the near-death of her son, Yianni Baglaneas, in April 2017, after he had aspirated on a piece of cake in a provider-operated group home. The group home staff failed to obtain proper medical care for Yianni for nearly a week after he aspirated. He was finally admitted to a hospital in critical condition and placed on a ventilator for 11 days.

DDS later concluded that seven employees of Yianni’s residential provider were at fault in the matter. Nevertheless, at least two of those employees have continued to work for the provider, Eves said.

“The systems that are in place are not working and we are failing to protect people with intellectual and developmental disabilities in Massachusetts,” Eves testified. “We have to do better.”

Eves urged the committee to support a minimum wage of $15 an hour for direct care workers, more funding for the Disabled Persons Protection Commission, and passage of “Nicky’s Law,” which would establish a registry of caregivers found to have committed abuse or neglect. Such persons would be banned from future employment in DDS-funded facilities.

Eves also noted that licensing reports on DDS residential and day program providers that she reviewed — including the provider operating her son’s group home — did not mention substantiated incidents of abuse or neglect. She said Massachusetts is falling behind a number of other states, which provide that information to families and guardians.

In his testimony, Frain also urged the committee to support more funding for the Disabled Persons Protection Commission, the state’s independent agency for investigating abuse and neglect of disabled adults. Because the agency is so grossly underfunded, he suggested that the committee consider either “fully funding” the agency or “partnering with the local police and district attorneys’ offices and let them investigate” the complaints.

Frain maintained that staffs of corporate providers, in particular, face pressure not to report complaints to the DPPC, and that the agency, in most cases, has to refer most of the complaints it receives to DDS. That is because the DPPC lacks the resources to investigate the complaints on its own.

Moreover, Frain maintained, the current investigative system is cumbersome. It can sometimes take weeks or months before either the DPPC or DDS begins investigating particular complaints, whereas police will show up in minutes and start such investigations immediately.

Frain also contended that “privatization of DDS services has been at the root of many of these problems.”

Other persons and organizations that testified Tuesday included DDS Commissioner Jane Ryder, the Arc of Massachusetts, the Massachusetts Disability Law Center, and the Massachusetts Developmental Disability Council.

COFAR is continuing to urge the Children and Families Committee to hold at least one additional hearing at which all members of the public to testify publicly before the panel. COFAR has also been trying to obtain a clear statement from the committee as to the scope of its ongoing review of the Department of Developmental Services.

For a number of years, COFAR has sought a comprehensive legislative investigation of the DDS-funded group home system, which is subject to continuing reports of abuse, neglect and inadequate financial oversight.