COFAR blog

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

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

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

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

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

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

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

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

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

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

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

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

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

After 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 in Haverhill, but that location was not disclosed at the time to any other members of the family.

In the months that followed, the family was only sporadically informed about their family member’s whereabouts.  Her sister, 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.  Ashley Barr currently lives and works in Rhode Island.

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

Guardian testifies against the family

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

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

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

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

Ashley acknowledged she and her father did become emotional at times during visits with her sister 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. “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 personally gave her a shower at the hospital. Her hair was so dirty and matted, Ashley said, that she had to use an entire bottle of shampoo and conditioner to untangle it.

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

David Barr frustrated in gaining guardianship

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

David and his daughter hug good-bye at Tewksbury State Hospital.

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

Family friend also denied visits 

The family friend who initially reported the alleged sexual abuse of the woman to police had initially been allowed to visit her, as noted earlier. However, when the friend tried to visit the woman at Tewksbury State in April on her 28^th 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. The friend said she understood that the only family member still allowed any contact at that point with the woman was the aunt, who had previously had little to do with her.

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

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

Call the Barr’s local legislators

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

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

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

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