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Advocating for her daughter’s care got a woman banned from DDS-funded group home; and her daughter got an eviction notice

April 24, 2018 1 comment

When Susan Fernstrom got her developmentally disabled daughter, Holly Harrison, into a group home in Danvers in June of 2015, she thought it would lessen some of the growing burden on her of caring for members of her family.

Susan’s husband, Patrick, was terminally ill with a brain tumor and needed his own intensive care. He died in December of that year.

Holly, who is now 39, had been born with Galactosemia, a rare genetic disorder, that causes intellectual disability and other complications, including coordination issues, and requires a controlled diet.

The group home is run by Toward Independent Living and Learning, Inc. (TILL), a corporate, nonprofit provider funded by the Department of Developmental Services. The residence was brand new and beautiful, and centrally located in the downtown in Danvers, near the mall.

But almost immediately, Susan became concerned when she realized there were no meal plans for any of the five women in the house. Two of the women are diabetics, and, like Holly, require special diets.

Susan and Patrick Fernstrom

Susan Fernstrom and her late husband, Patrick.  They arranged for their daughter, Holly’s, admission to the TILL-operated group home six months before Patrick died.

Beyond that, Holly wasn’t getting fed regularly. She was not fed or given water for up to nine hours at a time, Susan said. On many occasions, the staff forgot to give her lunch, particularly on weekends. In one instance, Holly was given a sandwich by the staff to eat that contained uncooked bacon.

The home wasn’t kept clean. There was clutter left outside Holly’s bedroom door and mold on the bathroom shower curtain and on the floor of the shower. “The bathroom was often filthy,” Susan said. “The staff would clean it when they knew investigators were coming, mostly due to complaints from me,” she said. Raw meat was often left in the sink.

In addition to the mold and clutter, it took months to hook up a shower curtain rod to the bathroom wall.

There was only one working light in the basement even though that was an area set aside for storage of extra clothing for Holly, which Susan frequently had to retrieve. Also, there was furniture and a large carpet roll placed in way of the clothing bins.

But when Susan raised these issues, she never anticipated the push-back she would receive, not only from the staff, but from Dafna Krouk-Gordon, the president of TILL. As of last August, Susan found herself banned under a written directive from TILL from entering the group home and therefore from being able to check directly on the care there.

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

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

However, under the ban imposed by TILL, Susan has been required to wait outside the house to meet with Holly, even in the dead of winter. She said the situation has made her feel “humiliated and like a criminal.”

Then, on March 20, Krouk-Gordon notified Susan in writing that her daughter would have to move out of the residence as of the end of April. The written notice did not accuse Susan or Holly of causing any disruption in the operation of the residence, but rather stated that Holly must move because the group home could not accommodate her need for assistance during nighttime fire drills.

Susan believes the real reason for the eviction notice was that she had raised issues of inadequate care and poor conditions in the residence.

We believe the eviction notice violates additional DDS regulations, which require a 45-day notice and the guardian’s consent to any move.

“I feel sick all the time and can’t sleep or eat,” Susan said.

I attempted to contact Krouk-Gordon both by telephone and by email. My email message, which I had sent on April 16 to her email address listed on the TILL website, was blocked. I then resent my query to other officials at TILL, but to date, no one has responded to it.

Throughout the ordeal, Susan said she has felt a lack of support from DDS officials whom she believes have allied themselves with Krouk-Gordon. She contends that rather than addressing her concerns, Kelly Lawless, DDS northeast regional director, has appeared to support Krouk-Gordon’s intention of evicting Holly from the residence.

Susan said that Holly has a strong emotional attachment to the other women in the group home, and that she does not feel, as her guardian, that it would be in Holly’s best interest to be moved to a place she is not familiar with and in which many of the same problems might reappear. What she would like to see happen is strong pressure put on TILL by DDS to fix the problems in Holly’s current residence.

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

Susan said she has both met and had a conference call with DDS Commissioner Jane Ryder, and that Ryder seemed sympathetic, particularly to her concern about being banned from the residence and Holly’s potential eviction. She said Ryder assured her early this month that she would issue a directive to Lawless “to work on these issues,” and that the directive would address the ban on entering the residence.

However, Susan said that in a subsequent phone conversation she had with Lawless, Lawless told her that she wanted only to discuss moving Holly out of the residence, and referred several times to Susan’s relationship with TILL management and staff as “broken.”

Susan said that at one point in that conversation, Lawless stated that an alternative residence for Holly had been located in Gloucester. Susan told her that as Holly’s guardian, she wanted to live close to her and that the Gloucester location was more than an hour away.

But Susan said Lawless not only appeared unsympathetic to her concern, she admonished her for voicing it, saying she was “‘appalled that this is all about you, Susan, not wanting to drive.'” Susan responded that it was not about her, but about her need, as Holly’s guardian, to be near Holly.

Last Tuesday (April 17), I emailed Ryder, asking if she would respond to those and other concerns and questions we have raised about this case. To date, I’ve received no response from Ryder.

On Wednesday, April 18, the day after my email to Ryder, Susan received an email from Lawless in which Lawless stated that in response to concerns Susan had raised about the TILL residence, Lawless and other DDS officials have directed DDS’s human rights officer “to make an unannounced visits (sic) to the house, and asked the Area Office to increase their visits to the house.”

Lawless said she and other DDS officials have “also asked our Office of Quality Management to conduct a review of the home to determine whether conditions in the home meet DDS quality standards.”

In a response to Lawless, Susan said she was pleased to hear about the planned visits and review by DDS. But she told Lawless she remained concerned that many of the issues she has raised, such as the staff’s failures to feed Holly adequately and regularly provide water to her, may not be observed by the inspectors.

In her email, Lawless appeared to walk back Krouk-Gordon’s eviction notice, at least partially. Her email stated that, “as I previously reported, DDS staff have worked with TILL and there is no plan to discontinue Holly’s services with TILL as of April 30, 2018.”

But Krouk-Gordon has not rescinded the March 20 eviction notice to Susan, and Lawless’s email made no mention of that notice. Lawless’s message also appeared to imply that DDS is continuing to push for Holly’s ultimate removal from the home. Lawless stated that, “I encourage you to work with DDS and TILL on coming to an agreement as to how appropriate services can be provided to Holly going forward, including exploring other options available, such as the Gloucester residence.”

Lawless’s email also appeared to suggest that even further restrictions on Susan’s access to Holly in the TILL residence might be imposed. While acknowledging that Susan has “concerns” regarding “the current guidelines in place around your visitation with Holly,” Lawless stated that she had reviewed the TILL directive banning Susan from the residence and had determined that the directive was “reasonable and compliant with DDS regulations concerning visitation.”

Lawless’s email, however, did not mention that the directive from TILL prohibits Susan from entering the home (see details of the directive below). Lawless described the directive as simply requiring “coordination and notice of any visits to the home and that the scheduled visits are to be at a mutually agreeable time.”

Lawless then indicated that she would seek to enact restrictions on visitation times for Susan. “I would like to suggest establishing a set time each week for the visits,” Lawless stated. “Having a set time, or times, each week will minimize the challenges around scheduling and allow for consistent visits with Holly.  I’m happy to coordinate with TILL a standing schedule if you would send me your preferred days and times.”

Lawless’s email did not state that Susan would be allowed inside the residence during those visits.

Visitation ban appears to violate DDS regulations

The written directive banning Susan from entering Holly’s residence was presented to Susan following a meeting she had with the group home staff last August 11. The directive was headed “Ash Street (group home) Family Communication Guidelines.”

While labeled “guidelines,” the document’s provisions were presented as binding policy on Susan.  Among the statements in the directive were the following:

  • You (Susan) will not go into the residence to bring items to Holly’s bedroom or go into the kitchen. Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away.
  • We ask that you not go inside the home unless there is a planned event or meeting that has already been established with the manager ahead of time.
  • Susan and the Residence Manager will communicate by telephone once per week at a time that is mutually agreed upon.
  • It is essential that you speak to the manager rather than speaking to staff directly. Only the manager can make house plans and follow through with scheduling needs.
  • All supervision of Holly’s diet will be handled by the residence LPN and Nutritionist. All changes to the menu and/or grocery list will be made through the nutritionist and LPN for the house. (The LPN never has had anything to do with Holly’s diet, Susan said.)
  • We ask that you only communicate with the nutritionist by email given that the time is limited and she receives multiple calls daily from the house as needed.

Since receiving the directive, Susan said she has been banned even from waiting for Holly in the foyer of the house, and must stand outside, even in the winter. In addition, the weekly phone calls with the house manager have been canceled, she said. And she has been told not to contact the nutritionist at all.

As Holly’s guardian, it is Susan’s legal duty to oversee her care and advocate in her best interest. Blocking her from having contact with her daughter inside her residence impedes her ability to carry out her legal duties as guardian.

Also, contrary to Lawless’s contention, we believe the ban on entering the group home violates DDS regulations governing the rights of DDS clients, which include “the right to be visited and to visit others under circumstances that are conducive to friendships and relationships…”

The DDS regulations further state that a DDS client’s guardian or family members “shall be permitted to visit at all times, unless the individual objects, and shall be provided with a suitable place to confer on a confidential basis…” (My emphasis)

The same DDS regulations state that:

Reasonable restrictions may be placed on the time and place of the visit in order to protect the welfare of the individual or the privacy of other individuals and to avoid serious disruptions in the normal functioning of the provider.  Arrangements shall be made for private visitation to the maximum extent possible. (my emphasis)

Susan said she thinks the real reason for the draconian restrictions placed on her is that TILL’s management is “trying to keep me from knowing anything about what is going on in the home.”

Susan said she was told that her presence in the residence was making residents uncomfortable, but Susan doesn’t believe that is the case. “That’s a lie,” she said. “The other girls (in the house) gave me hugs and asked how I am. I would make them omelets, and I showed staff how to make fresh fish. Of course, I’m not allowed to do any of that anymore.”

Susan added that she personally purchased needed cooking equipment for the entire house, and brought the residents and staff fresh corn on the cob, strawberries and apples from a farm over the summer.

In other cases that we have investigated, we have found that the statement that a family member was making residents uncomfortable was often used as an excuse for restricting their access to persons living in provider residences.

Susan said that the directive banning her from the residence appeared to follow directly from checks she had been doing under an agreement with the staff of the cabinets and the refrigerator in the kitchen “to make sure the food they were buying for Holly was dairy free.” After doing the checks “for about three weeks and informing the staff that there was dairy in multiple food products, including food bought specifically for Holly,”  Susan said she received the directive denying her access to the kitchen and entire house.

With regard to the requirement that she communicate directly with the house manager, Susan said she usually attempted to phone or email the house manager, particularly in instances in which Holly had missed appointments, but her emails were often not answered and the manager’s voicemail was often full. She said she once talked to the house staff during a weekend visit because she found that no lunch had been given to Holly that day. “Our conversation was very polite,” she said. “There is no one you can reach in management on weekends. My daughter needed to eat.”

The ban on allowing her into the house has made it particularly difficult to get Holly ready for outings and trips home, Susan said. The staff would frequently forget to pack needed items such as underwear, pants, pajamas, and medication.

Recently, despite the visitation ban, Susan said she requested to be allowed into the basement to see what clothing Holly now has. “ I haven’t been allowed in so long I can’t remember,” she wrote in an email to us. “I know Holly is missing things and I know the staff doesn’t know everything she has. Do I sound frustrated?”

In her email response to Lawless’s April 18 message, Susan stated that:

I want the ability to visit Holly on any day of the week or (at any) time as long as it is not disrupting the functioning of the home, and set visitation times will not allow that flexibility nor does that allow for visitation to the maximum amount extent possible.

My daughter is not in a prison, this is her home and Holly has the right to visit with friends and family as the regulations clearly state.  I also want the ability to sit in the living room with Holly or if we choose or walk into the kitchen with her as any other house guest would do and as other family members are permitted to do.

When I drop Holly off after a visit outside the home I want to walk inside the front door and stand in the foyer area, as any other parents are allowed to do.  I think it’s also important to note that as Holly’s guardian, I have a legal duty to see Holly’s living conditions to ensure her wellbeing.

One-hour visit allowed in April

Susan said that on April 1, she was given permission to enter the residence for an hour because she needed to help pack Holly’s clothes for a trip to Florida. After being given a time for the visit that she couldn’t meet, she finally won approval for one hour on that Sunday.

Susan said she pushed back and said she needed two hours because Holly needed to try on clothes to see what fit.  She also needed to check to make sure Holly’s medication was correct.

Susan said that when she arrived that Easter Sunday at the residence, Krouk-Gordon arrived as well, and then spent some of her time right outside Holly’s room. Susan said Krouk-Gordon’s close presence made her feel uncomfortable and that she believes it was meant to intimidate her.

Eviction notice cites a fire drill policy that does not comply with regulations

Krouk-Gordon’s notice to Susan that Holly must leave the residence as of April 30 did not include any allegations that either Holly or Susan had acted in a disruptive manner. Instead, the March 20 eviction letter stated that Holly must leave because the home could not accommodate her need for assistance during nighttime fire drills at the residence.

Susan said that Holly needs assistance because her blood pressure drops significantly if she is woken up suddenly. As a result, she can suddenly faint and fall unless she is given water immediately after waking up.

Last November, Holly did fall after having been suddenly woken by the fire alarm, which had signaled a middle-of-the-night fire drill. She suffered a concussion and a black eye in the fall.

Susan said the staff made Holly finish the drill immediately after she regained consciousness, and did not take her to the emergency room. The incident and injury were not reported by the staff to the Disabled Persons Protection Commission, as required by law. And Susan wasn’t notified about the injury until  mid-morning the following day.

Susan contends that the danger posed by the fire drills could be solved either by adding a staff member to the group home at night to assist Holly, or by moving her bedroom to a currently empty room on the first floor in which she would have time to quickly drink a small bottle of water and still be able to exit with assistance within the required 2½ minutes. The front door to the residence is right outside that downstairs room.

Susan said, however, that neither TILL nor DDS have expressed support for her suggestions.

In failing to alter the existing fire drill policy, DDS and TILL would appear to be in violation of DDS regulations, which state that “providers of group homes “shall assure that …strategies are developed for meeting the specific and unique safety needs of each individual” (my emphasis).

In addition, the regulations state that “for sites where residential supports…are provided, safe evacuation is defined as assuring that all individuals can get out of the home in 2½ minutes, with or without assistance...” (my emphasis).

The implications of the regulations in this regard seem clear and unambiguous to us. The provider management cannot legally evict a resident because the home is not able to serve that resident in compliance with the regulations. The management instead needs to take steps to comply with the regulations.

Eviction notice did not comply with DDS transfer regulations

It also appears to us that Krouk-Gordon’s March 20 letter notifying Susan of Holly’s pending eviction did not comply with DDS transfer regulations, which require that Susan be provided with an official 45-day notice of a proposed transfer out of the group home.

Under the regulations, the written notice must include a statement explaining how the proposed move would result in improved services and supports and quality of life for Holly. The notice must also specify the location of the proposed home, include a statement that the parties may visit and examine the proposed home, and must further include a request for consent by Susan, as Holly’s guardian, to the proposed transfer.

None of those statements was included in the March 20 letter. As such, the letter does not, in our view, constitute a legal notice under the regulations to Susan of a pending transfer from the residence.

TILL never committed to addressing nutrition issues

Susan said that despite her efforts to work with TILL and with DDS to address the nutrition issues in the residence, TILL staff and management have not shown a consistent willingness to work with her.

Susan said that while the staff initially voiced agreement with her requests to improve Holly’s nutritional regimen, there was no follow-through. She personally developed recipes, grocery lists, and menus for all the residents covering six-periods. Yet, the items were often not purchased, and the recipes were not followed.

The group home at first agreed to allow a DDS nurse to work with Susan to put menus together. But then TILL management suddenly objected, and the nurse was taken off the project. “TILL didn’t like that she was doing the menus,” Susan said.

DDS then assigned a nutritionist to work with Holly, but the nutritionist’s approved hours were limited. Even with the system of checks that Susan and the nutritionist provided, the staff on more than one occasion bought a type of cheese for Holly that is strictly prohibited from her diet. “They weren’t following the recipes,” Susan said.

Susan said the staff recently took Holly to her primary care doctor for an exam, but had given her nothing to eat or drink that day. The doctor was so concerned, she recorded it in Holly’s medical record.

In another incident, the group home staff gave Holly a sandwich for lunch that included raw bacon. The manager at her work site, which is operated by The Northeast Arc, was so concerned, she wrote up a report of neglect, Susan said.

The September 5, 2017, report, which was provided to Susan by the work site, stated that, “During lunch, Holly had a BLT sandwich and she pulled the bacon from it ‘to save the best for last,’ and we noticed that it was raw.”  The worksite staffer who wrote the report stated that the worksite staff cooked the bacon in a microwave and monitored Holly for illness. Other than notifying Susan and the group home manager, the worksite took no further action in the matter.

Susan noted that she has been told that the families of the other residents in the group home are largely happy with the care there. But that may be, she said, because the other residents are higher functioning than Holly. The parents of one of the residents lives out of state, while another resident was working toward getting her driver’s license. Another resident is capable of using Boston’s MBTA system.

Unfortunately, this is the kind of case we hear about all too often. As we have said many times, the DDS group home system is broken. It is long overdue that the Legislature and its Joint Children, Families, and Persons with Disabilities Committee begin to address these issues.

In January, the Children and Families Committee held a hearing in which committee members gently queried Ryder about reports of widespread abuse and neglect in the DDS system. A large group of families and guardians attended the hearing, but none of those people were allowed to testify publicly.

We have to wonder what it will take to bring about needed action in this and so many similar cases.

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DPPC seeks to keep all investigative records in death case secret

April 12, 2018 2 comments

It would be nice if the Disabled Persons Protection Commission was on the side of the disabled and their families, but it often seems that the agency is more interested in protecting its turf.

We’ve been involved in a battle since February for the DPPC’s investigative records regarding the death of Karen McGowen, a client of the Department of Developmental Services.  Ms. McGowen was killed in an apparent accident last November. She reportedly fell from a wheelchair lift while getting out of a van at her DDS-funded day program in Pittsfield.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, has confirmed that it is investigating Karen McGowen’s death.

DPPC HQ

DPPC headquarters in Braintree (Google Maps image)

Little if any information has been publicly released about the incident. As a nonprofit advocacy organization for persons with developmental disabilities and their families, we have been  trying to determine the circumstances under which her death occurred.

On February 13, the DPPC denied my request for the records in the case, stating that the investigation was incomplete. But in his letter denying the records, Andrew Levrault, the DPPC’s assistant general counsel, added that even when the investigation is completed, any records the Commission has on the case would be exempt from public disclosure and that I would need permission from Karen’s legal representative to obtain them.

The problem is we don’t know who Karen’s legal representative might be or even if she had a legal representative.

We have often advocated for more funding for the DPPC, which operates with so few resources that it has to refer most of its investigations to the Department of Developmental Services. So it’s doubly disappointing that to the extent the Commission does get involved in these crucial investigations, it has taken the position that the work it does must be kept secret.

Rebecca Murray, the state’s Public Records Supervisor, sided with us in the matter in a decision on March 22.  Murray’s decision stated that the DPPC’s February 13 letter to us  “did not contain the specificity required in a denial of access to public records…” The DPPC, Murray said, had merely cited exemptions to the Public Records Law without further explanation. She ordered the Commission to provide me with responsive records within 10 business days.

We’re not sure if Murray’s decision is precedent setting, although it does appear to clear up some confusion we’ve had as to whether we are entitled to DPPC reports in cases in which we are not either the guardians of the victims in the case or the complainants.

The DPPC, however, has a different view of the Public Records Law than does the Public Records Supervisor. On March 29, the Commission asked Murray to reconsider her March 22 decision.

Levrault presented the Commission’s arguments in favor of withholding all records in the case in a 10-page letter to Murray.

But Attorney Levrault’s letter continues in our view to lack the specificity required by Murray to justify withholding documents, and unfortunately leads us to the conclusion that the Commission is more concerned about conducting its work in secret than in satisfying the public interest.

Attorney Levrault’s March 29 letter

In his letter to Murray, Attorney Levrault noted that the records in the possession of the DPPC include three “intakes,” an “initial response” in the case, and a draft investigation report. As of March 29, the DPPC investigation was still pending, he said.

Levrault first cited an exemption to the Public Records Law that allows agencies to keep records secret if existing statutes expressly provide for that. In this case, the DPPC’s enabling statute says the agency “shall promulgate regulations to exclude personally identifiable information regarding the subjects of investigations…”

Levrault argued that  it would be impossible for the DPPC “to protect the interests of all parties in the DPPC investigation through redaction of personally identifying information.”  As a result, he stated, the Commission has concluded that the entire record in the case must be kept secret.

However, Levrault’s letter provided no specifics, as required by Murray’s March 22 decision, to explain why it would be impossible to protect the various parties’ interests.

We would note, moreover, that the subject in this case is deceased. It has been our experience that when agencies argue for protection of the privacy of people who are deceased, it is usually a cover for unwarranted secrecy.

In fact, Public Records Supervisor Murray stated in a March 29, 2017, decision involving an appeal for records by The Cape Cod Times that “…it is generally held that one’s right to privacy is extinguished at death.” Murray noted that the only privacy interest that survives an individual’s death is their interest in their medical information.

Levrault’s letter did go on to cite an exemption to the Public Records law that concerns medical information relating to a “specifically named individual” and to any other materials that might constitute “an unwarranted invasion of personal privacy.”  Again, without providing any specific information in support of his claim, Levrault stated that the documents we are seeking contained information “that could significantly impact the reputations of the parties involved in the allegations…”

“There is no showing here,” Levrault continued, “that the public interest in the identities and actions of the alleged victim, alleged abusers, or other parties involved in the abuse investigation outweighs the strong privacy interests of the parties whose information would be disclosed.”

First of all, we are not seeking anyone’s medical information or any other information that might be personally embarrassing, but are seeking only investigative documents involving a fatal incident.

Secondly, it is a major stretch to argue that there has been no showing that there is a strong public interest in the circumstances of this case, particularly given that Karen’s death is the subject of an acknowledged investigation of possible abuse or neglect.

An attorney for the Public Records Division indicated that the DPPC will face a tall hurdle in attempting to demonstrate that it is entitled to withhold all records in their entirety from public disclosure just because those records refer to a specifically named individual. The DPPC would have to prove that “every single word in the records revealed an intimate detail” about that individual, the attorney said.

Levrault then cited another Public Records Law exemption relating to investigatory materials, the disclosure of which “would probably so prejudice the possibility of effective law enforcement that such disclosure would not be in the public interest.”

Levrault stated that the exemption is needed to allow investigators to provide witnesses with an assurance of confidentiality “so that they will speak openly and voluntarily about matters.”

However, this argument still lacks specificity given that Levrault did not even say whether there is an ongoing criminal investigation in this case. Moreover, the statement about providing witnesses with an assurance of confidentiality does not recognize that confidentiality of witnesses can still be maintained by redacting their names and other identifying characteristics.

Finally, Attorney Levrault argued that the investigation report itself was still in draft form and therefore could not be released. However, this statement did not address the DPPC’s position that all of the records we have requested should be withheld in their entirety.

In sum, what the DPPC actually appears to be arguing here is that the Commission has no obligation to ever publicly release any investigative report about the abuse or neglect of any “specifically named individual.” The absurd logic underlying this argument is that the supposed violation of an individual’s privacy in releasing the documents, even if the person died as a result of the abuse or neglect, is somehow worse than the actions that caused their injuries or death.

In her March 22 decision in the case, Public Records Supervisor Murray noted that the DPPC “bears the burden to prove with specificity any exemption (to the Public Records Law) that applies.”

It seems to us that in his March 29 letter to Murray asking for reconsideration of her decision, Attorney Levrault not only did not meet that burden of specificity, he did not even go any further in trying to meet it than in his original denial of our original records request in February.

 

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17 years later, a man hopes some good will come of his brother’s scalding death in a DDS group home

February 9, 2018 5 comments

Richard Buckley desperately wanted an explanation as to how it was possible that his older, intellectually disabled brother could have received injuries in his group home that were serious enough to cause his death.

But no one, it seemed, wanted to listen to him, much less offer any answers to his questions.

On the morning of March 30, 2001, Richard’s brother, David, received second and third degree burns to his buttocks, legs, and genital area while being showered by staff in a West Peabody-based group home run by the Department of Developmental Services. The temperature of the water in the residence was later measured at over 160 degrees.

David Buckley headshot

David Russell Buckley

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 almost unbelievably did not substantiate any allegations of abuse or neglect.

Before that shower incident, David had endured a series of incidents of alleged abuse and neglect in a corporate-provider-run group home in Hamilton, including an alleged sexual assault by a caregiver. That incident had been witnessed by another staff member of the home. Yet, the witness failed to report the alleged abuse for two weeks, and, as a result, no one was ever criminally charged in that case either. 

David, who was 39 years old when he died, had Down Syndrome and Obsessive Compulsive Disorder. He stood only 4 feet, 10 inches tall and weighed about 95 pounds.  He is described by his family as a loving man who enjoyed collecting harmonicas and Snoopy items from the Peanuts comic strip.

Richard Buckley attended last month’s oversight hearing on DDS care, which was held by the Legislature’s Children, Families, and Persons with Disabilities Committee. He had put his brother’s case aside for nearly 17 years. But when he heard that the committee was scheduled to hold the hearing, he decided he would attend and possibly testify, if only to help others in similar situations.

Yet the committee would not accept verbal testimony from Richard or any other families with similar stories of abuse and neglect. “It felt like the committee pretty much put on a dog and pony show, with the invited officials stating their policies and processes and no one really questioning them on any level,” Richard said. “There seemed to be a lack of willingness (on the part of the committee) to bring up important issues.”

But while Richard was disappointed in the hearing, he says he nevertheless remains inspired by those other families that have continued fighting for answers. In particular, he said, he is inspired by Anna Eves, who has been fighting relentlessly for changes in the DDS system in the wake of the near death of her son, Yianni Baglaneas, in a group home last April.

“The same types of abuse just keeps happening,” Richard said, “but Anna spearheaded a response to it that may create change. After hearing about that, I thought if they (Anna and the other families) can use my brother’s story in any way, I would send as much information about it as I could find. I want to do what I can do to follow up Anna’s work, which is phenomenal.”

For years following David’s death, Richard said, he and his family were too discouraged to do anything.

David’s father and sister, who were David’s co-guardians at the time, sued the state for $100,000, which is the maximum state liability under the Massachusetts Tort Claims Act. The state settled for that amount; but the state then kept all but $2,000 of the settlement as charges for David’s medical care.

Richard, who was not a party to the lawsuit, said what the family really wanted were answers, and they wanted those directly responsible for David’s death to be held accountable. 

Initially, there was word that the Essex County District Attorney’s office was investigating the case; but months went by, and the family could not get any information about it. In a letter to David’s father in July 2001, then state Representative Anthony Verga said he had been assured by the D.A.’s  office that “the case was on track and still under investigation.” Verga promised “to continue to help push for prosecution of the case.”

But the case was never prosecuted. The family was told by their attorney that the prosecution was ultimately called off after September 2001 because much of the D.A.’s resources had been diverted toward the investigation of the 9/11 terror attacks. The two airliners that hit the World Trade Center in those attacks had originated in Boston.

“I understand the logic behind putting their resources into the 9/11 case, that but doesn’t help our family’s closure. We were left in the dark,” Richard said. He said the family was also told by their attorney that the D.A. never actually wanted to investigate David’s case because “this was a case of the state prosecuting the state. It was considered a  lose-lose situation.”

Then in February 2002, the family received a copy of the DDS investigation report, which failed to substantiate any allegations of abuse. “The final finding was basically ‘we can’t prove anything, and therefore nothing happened,'” Richard said. “I was stunned by that conclusion.”

As time went on, the family received less and less information about David’s death.

“I remember calling people from various departments and getting some information that would give us glimmer of hope, and then we would not hear anything,” Richard said. At one point, he said, he was told to contact a DDS official who was located at Danvers State Hospital. “I sat in her office for eight hours waiting for her to come out, and she never appeared. I also left multiple messages with her. She didn’t want to talk to me.”

Richard said that he gradually lost hope that anything would be done about the case. “We finally had to walk away from it,” he said. “There was no need killing ourselves trying to be heard by people who didn’t want to hear us.”

Then when  he heard last month about the Children and Families Committee hearing and about Anna Eves’ efforts to bring her son’s case to light, he said he began to revisit David’s case for the first time in all those years.

Buckley case David and Richard photo3

David (left) and Richard Buckley  circa 1970 when David was about 10 years old and Richard was about 4.

Details of scalding case

(Please be advised that some of the details listed below are graphic.)

According to the DDS investigation report, David had woken up in his group home at 6:15 on the morning of March 30, 2001, and had defecated in his bed. When one of two overnight-shift staff members, who were identified in the report as alleged abusers, tried to guide him to the shower, he reportedly resisted.

One of the alleged abusers told the DDS investigator that she used one hand to hold David and used the other hand to spray him with a hand-held shower attachment in a tub in the bathroom.  She said the second alleged abuser held David’s other arm to keep him still.

The first alleged abuser stated that after the second staff member suggested the water might be too hot, she noticed that David’s legs looked red and immediately took him out of the tub and sat him down in bathroom where she noticed his legs peeling.  At that point, she said, she applied cold compresses to David’s legs and notified a nurse about the situation via a beeper. She estimated that she had sprayed David with the attachment for about 30 seconds.

The DDS report states that the beeper nurse asked the first alleged abuser whether she had checked the water temperature prior to showering David, and that the beeper nurse stated that the alleged abuser “did not really provide an answer.”

Two maintenance workers, who were called to the residence on the morning of the incident, noted that the water temperature in the bathroom initially read as high as 162 degrees and then dropped to 150 degrees. One of the workers further stated that the bottom cover to controls on a water tank in a back room of the residence was on the floor.

The American Society of Sanitary Engineering states that at a water temperature of 154 degrees or above, scalding of the skin is immediate.  Scalding would occur in 30 seconds at a temperature of 126 degrees.  

The DDS report stated that departmental regulations require that the water temperature in residential facilities must read between 110 and 130 degrees. The report noted that the water temperature in David’s group home had been found the previous December to be 158 degrees. Three maintenance reports prior to the shower incident indicated that the temperature was over the DDS limit.

According to the DDS report, no issues regarding the water temperature were identified in any DDS licensure reports for the group home.

The DDS investigative report stated that both alleged abusers in the shower incident left the residence after their shift ended at 7 a.m., and a new staff member arrived. That first-shift staff member stated that he thought David’s injuries looked serious and that he was shivering as if he might be in shock. The staff member notified an on-call nurse who came to the residence.

The on-call nurse stated that she observed reddened and peeling areas on David’s upper thighs, genital area, and buttocks, and that he screamed in pain when she tried to apply a compress to those areas. The nurse called 911 at 7:20 a.m., which was approximately an hour after David was first exposed to the hot water in the shower.

According to the DDS report, a physician at Massachusetts General Hospital, whose name was redacted, stated that he did not believe the one-hour delay in calling the ambulance “could have a significant effect on outcome” of David’s injuries.

The DDS report noted a number of inconsistencies between the accounts given by the two alleged abusers. For instance, while the first alleged abuser stated that that second alleged abuser had stayed in the bathroom during the entire incident and had held David’s other arm, the second alleged abuser denied that he had done so.

David was taken by ambulance to Massachusetts General Hospital and was transferred from the burn unit to the intensive care unit on the same day because he was having seizures and suffered respiratory arrest.

Richard said that while David was at Mass General, the family had to fight for adequate care for him even there. The family didn’t feel the doctors were willing to give David sufficient medication to reduce his pain.

Richard said, though, that the nurses did what they could. “They were phenomenal,” he said.

The death certificate stated that David died from “complications from a thermal injury.” Those complications included a sepsis infection and pneumonia.

The DDS report ultimately concluded that while evidence showed that the burns David received in the shower directly led to his death, there was not sufficient evidence that his injuries were “linked to an act or omission by caretakers.”

The report also concluded that while it was “concerning” that the water temperature of the shower exceeded DDS regulations, neither the landlord of the group home nor the maintenance staff are considered caretakers under state law, and therefore none of them could be found negligent.  There was insufficient evidence, the report added, to determine whether the staff or house manager of the group home had knowledge of an ongoing problem with spiking water temperature in the residence.

After David’s death, anti-scalding devices were placed on showers in the residence and the staff was instructed to monitor the water temperature prior to giving showers. The landlord, whose name was redacted in the report, was unwilling, according to the report, to replace the electric water heater in the residence with an oil-fired hot water heater even though the water temperatures were continuing to spike.

The report recommended that maintenance staff get training in adjusting water tanks and that additional staff including the house manager review maintenance records.

Despite the report’s conclusion that there was insufficient evidence to substantiate abuse or neglect in David’s death, Richard believes his death was the result of inadequate care if not intentional abuse.  

The DDS investigative report appears to leave many questions unanswered 

A review of the DDS report raises a number of questions, not only about the circumstances surrounding David’s death, but about the thoroughness of the investigation itself.

For instance, the DDS report noted that the Mass. General doctor had said that an hour delay in calling an ambulance in the case was likely not a factor in David’s death. As a result, the investigator concluded that the delay was not an omission in care.

Among our questions are: Did the investigator really press the doctor on his or her assessment that the delay in calling the ambulance was not an issue? David reportedly went into shock while waiting for the ambulance. Is it really possible that an hour delay in calling an ambulance wouldn’t make a difference in that case?

Who was the Mass. General medical expert consulted by the DDS investigator, and why was his or her name redacted in the report? Other names of staff, nurses and officials involved weren’t redacted.

Also, it seems there were a number of other questions that should have been asked of the medical expert, but weren’t.  For instance, it doesn’t appear the medical expert was asked what the temperature of the water would have had to have been to have resulted in the degree of skin damage that David suffered.

Other questions that appear to have gone unanswered by the report include the following:

  • How is it possible that one person could have held a person under scalding water for 30 seconds using only one arm? Wouldn’t it have taken two people to hold someone under those conditions?

(As noted, at least one of the alleged abusers said both of the staff members had held David while she showered him with a hand-held shower attachment. The second alleged abuser denied that was the case. The report acknowledged inconsistencies between the two alleged abusers’ accounts, but the investigator didn’t seem to press them to determine who was lying.)

  • Did the investigator ask the staff about David’s strength, agility, or ability to get away from one person holding him by one hand?
  • Why were there burns only on David’s legs, buttocks and genital area? Doesn’t that indicate those areas may have been intentionally targeted?
  • What does the report mean in stating that the first alleged abuser “didn’t really provide an answer” to the question whether she checked the water temperature prior to showering David?  If she refused to provide an answer to a question like that from a nurse, isn’t that, in itself, evidence of possible negligence?
  • Was everyone in the house questioned about the removal of the cover on the controls to the water heater at the time of the incident?
  • Had there been any other instances in the home of David or any other residents getting burned or complaining that the water was too hot? Were there any other injury complaints filed with the Disabled Persons Protection Commission about the home in that regard?
  • Is it possible that the reason David always resisted getting showered, and resisted that morning, was because the water was always too hot?
  • Is it really possible that David’s resistance or yelling did not intensify, as both alleged abusers claimed, when the scalding water was sprayed on him, thus warning the staff about a problem?

Previous allegations of abuse in provider-run group home

David was subjected to at least five previous alleged instances of abuse or neglect in a group home in Hamilton run by Turning Point, A DDS corporate provider, between 1996 and 1998.

In one i­­ncident in August 1998, a witness reported an alleged sexual assault of David by a caregiver in a bathroom of the group home. However, the witness did not report the incident to investigators until some two weeks after it allegedly occurred.

Due to the two-week delay in reporting the incident, a medical examination of David did not find evidence of sexual assault. No one was criminally charged in the case.

In an incident in February 1997, DDS did uphold allegations of mistreatment and abuse.  The alleged abuser, a probationary employee, allegedly initiated the incident by drinking a milkshake in front of David and telling him he couldn’t have any of the drink.

According to the DDS report, David became upset and agitated over the denial of the milkshake, and threw a telephone across the room and then refused an order from the alleged abuser to pick it up. The alleged abuser at one point dragged David into the living room and put his foot on his chest, according to a witness. David received a small cut on his forehead in the incident.

Recalling the incident, Richard said his brother, who was largely mute, would often pick up a telephone when the two of them got into childhood spats with each other, and would indicate he was calling the police on Richard. “When he threw the phone (in the incident in the group home), he was telling on his caretaker,” Richard said. “But no one listened to him. No one took the time to know his language.”

The alleged abuser was found to have violated David’s treatment plan, which called for positive reinforcement, not force. Allegations of mistreatment and abuse were substantiated by DDS, although emotional abuse was unsubstantiated. The alleged abuser in that case was subsequently terminated from employment with the provider.

In a third incident in December 1996, David came home for Christmas with a temperature of 103 degrees and a bad cough. His weight was down to 80 pounds.

The DDS report on the incident stated that the group home staff claimed to be unaware that he was sick. On December 27, David was brought to a doctor and diagnosed with pneumonia.

Staff and employees interviewed said David did not appear to be ill. Allegations of neglect of care were found to be unsubstantiated.

“The closest person I know in life”

In an email sent to friends and family members while David was dying from the burns inflicted in the showering incident, Richard wrote that his older brother “is the closest person I know in life, and we grew up fairly inseparable. He has Down Syndrome, Autism, and various other challenges. But that is irrelevant in how much he means to me.”

Richard added, “My brother is just an innocent, a vessel of love. He only reacts to the outside world in kind. If he loves, it is because he has felt love. If he hurts, it is because someone has hurt him…”

Once again, we are calling on the Children and Families Committee to hold another hearing to listen to Richard and the many other families who have had similar experiences in the DDS system.

For far too long, few, if anyone, in positions of authority in the state have been willing to listen to these families.

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

January 26, 2018 9 comments

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

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

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

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

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

Donald Vitkus photo4

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As Orzechowski described it:

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

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

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

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

Children and Families Committee needs to show it’s serious about investigating the DDS group home system

January 22, 2018 5 comments

At the start of a legislative hearing last week on the Department of Developmental Services, state Representative Kay Khan made what seemed to be a major announcement about a new federal report on problems in group home care in Massachusetts and two other New England states.

Khan, who is House chair of the Children, Families and Persons with Disabilities Committee, said the committee will be guided by the report in whatever review or investigation her panel  undertakes of the DDS system in Massachusetts.

But if that’s the case, it doesn’t look as though the Children and Families Committee will be doing much of an investigation because there wasn’t much in the report, which was issued by the Inspector General for the federal Department of Health and Human Services.

I first developed the pessimistic assessment that the committee wasn’t going to do much of an investigation after listening to an hour of listless questioning by Khan and other legislators of the heads of DDS and the Disabled Persons Protection Commission during last Wednesday’s hearing.  Reading through the HHS IG’s report only strengthened that assessment.

The committee scheduled last week’s hearing in the wake of a case last year in which Yianni Baglaneas, a young man with Down Syndrome, nearly died in a DDS-funded group home after aspirating on a piece of cake.

Although the committee hearing room last week was filled with family members of DDS clients, including Yianni’s mother, Anna Eves, those family members were not permitted to testify verbally.  The Children and Families Committee wanted to hear only from Acting DDS Commissioner Jane Ryder and from Nancy Alterio, executive director of the DPPC, an agency charged with investigating abuse and neglect of disabled persons.

We hope the committee gets more serious about this investigation. We have submitted written testimony (here and here) to the panel and have read the written testimony from Anna and from many other family members and guardians who detailed harrowing experiences in a dysfunctional system.

During last week’s hearing, Ryder, in particular, painted a rosy picture of DDS’s role in managing and overseeing the group-home system. None of the Children and Families Committee members challenged Ryder’s assertions or asked any particularly probing questions of her.

Anna Eves and Michael Horn at hearing 1.17.18

Senator Joan Lovely, Senate chair of the Children and Families Committee, talks following last week’s committee hearing with Michael Horn, the father of Alexa, who suffered unexplained injuries while living in a group home. At left is Anna Eves, the mother of Yianni Baglaneas, who nearly died in his group home after aspirating on a piece of cake. Neither Eves nor Horn were allowed to testify verbally before the committee about those cases.

We have been calling for years for a comprehensive legislative review of the system of care for persons with developmental disabilities in Massachusetts. The last such review was done in the late 1990s by the House Post Audit and Oversight Committee, which found problems of abuse, neglect, and financial irregularities throughout the system.

When I first glanced through the latest federal IG report, I thought that agency had finally produced a report on the level of that Post Audit Committee report in Massachusetts.  The IG report looked comprehensive. But I was admittedly seduced by the color and graphics. After actually reading the report, my assessment of it changed.

First, it turns out the findings in the IG’s report about failures to report abuse and neglect incidents in Massachusetts were simply repeated from an earlier report issued by the IG in July 2016.

That previous report found that abuse and neglect incidents in Massachusetts were not being reported regularly to investigators. But that report was limited to that single issue about incident reporting. The IG had also previously issued a similar report about Connecticut.

Moreover, the new material in the latest IG’s report consists of a series of vague recommendations that don’t seem to fully address a request in 2013 by U.S. Senator Chris Murphy of Connecticut for a major investigation into abuse and neglect in privatized group homes throughout the country.

Sen. Murphy’s letter in 2013 to the IG concluded by stating:

Privatization of care may mean lower costs but without the proper oversight and requirements for well-trained staff. While individuals with developmental disabilities may not be able to speak for themselves, we are not absolved of the responsibility to care for them in a humane and fair manner. … Again, I respectfully request that you conduct an investigation into this issue. I believe that it would be able to shed light on the trend towards privatization and the impact that has on the care of the individuals. (my emphasis)

The IG’s report, however, doesn’t appear to address issues related to privatization such as low wages paid to direct-care staff, high turnover, denial of family rights to visitation, violations of federal law requiring that DDS provide state-run services and other care options to persons desiring them; or violations of federal law stating that families are the key decision-makers in the care of the intellectually disabled.

There is no reference anywhere in the IG’s report to problems accompanying the increasing privatization of services or to the resulting elimination of state-run programs, or the resulting lack of meaningful activities for participants in day programs, or the excess funding of salaries of nonprofit executives.  Murphy specifically stated in his letter to the IG that he hoped the IG’s investigation “would be able to shed light on the trend towards privatization and the impact that has had on the care of the individuals.”

One has to wonder if anyone from the IG’s office has read any of a number of media reports in recent years of the deeply troubling problems plaguing group home systems around the country.

Those reports include exposes in 2013 by The New York Times and The Hartford Courant,  (here and here)  and more recent exposes by papers such as The Chicago Tribune. That latter newspaper reported last year that while officials in Illinois continued to issue rosy accounts of the process of transferring clients from developmental centers being closed in that state to group homes, many of those group homes were “underfunded, understaffed and dangerously unprepared for new arrivals with complex needs.”

We reported that the HHS IG first produced a virtual joke of a report in 2015 on the group home system in New York State. That report had no critical findings and was a total of six pages long.

As noted, at least part of last week’s IG report was a rehash of those previous findings on incident reporting in Massachusetts and Connecticut. The latest report does purport to go further than the previous reports by including “suggestions for ensuring group-home beneficiary health and safety.”

For instance, the latest IG report includes recommendations on “quality assurance mechanisms” for community-based services.

But while those recommendations seem intended to get to the larger issues inherent in care in the provider system, they are still vague. The recommendations are presented in an appendix to the report, but little explanation and few specifics are provided even there.

Under a heading in the appendix on the “quality assurance mechanisms,” the report recommends “person-centered planning.” But there is no explanation provided of person-centered planning, which is an approach being promoted in Massachusetts by DDS. We’ve expressed concerns that person-centered planning has the potential to marginalize families and guardians in helping develop individual support plans or ISPs.

The same appendix in the HHS IG report also calls for audits done by providers that:

  • Include assessments of staff training (There are no specifics provided about this.)
  • Include assessments of performance evaluation (Again, no specifics.)

An additional category in the appendix is labeled “Assessment of the fiscal integrity of (provider) service billing and reimbursement.” This would appear to be a key recommendation regarding financial integrity, but it consists only of the following two statements, with no specifics or explanation:

  • Includes ongoing State desk audits
  • Includes periodic on site audits of select service providers and support coordination agencies

Finally, the report states that the federal Centers for Medicare and Medicaid Services should form a “SWAT team” in order to address “serious health and safety findings involving group homes.” But while that sounds impressive and urgent, the report provides no details about what such a SWAT team would consist of or do.

We hope the Children and Families Committee develops an investigative scope that goes well beyond that of the HHS IG. We also think the committee can demonstrate its seriousness by scheduling another hearing in which families would be invited to provide verbal testimony.

Last week, Senator Joan Lovely, the Senate chair of the committee, told some family members that she would speak to Rep. Khan about scheduling that additional hearing. We hope that happens soon.

Families want legislative committee to know the value of places like the Wrentham Developmental Center

January 16, 2018 1 comment

As a legislative committee prepares for an oversight hearing Wednesday on the Department of Developmental Services system, several family members of residents of the Wrentham Developmental Center said they hope the committee will recognize the Center’s value and that of facilities like it.

In a COFAR membership meeting on Saturday, family members described harrowing accounts of their experiences in privatized, DDS-funded group homes, and the arduous paths they had to take in order to get their loved ones into either the Wrentham Center or state-run group homes.

Many of those family members, such as Pat and Michael Horn, plan to submit written testimony about those experiences to the Legislature’s Children, Families, and Persons with Disabilities Committee, which has scheduled an oversight hearing on DDS on Wednesday. (As we have noted, the committee announced that family members would not be allowed to testify before the committee in person, but could only submit written testimony.)

“The care here (at Wrentham) is exquisite,” said Pat Horn, whose daughter, Alexa, had suffered broken bones and other unexplained injuries in a corporate provider-run group home before they got her to Wrentham. “We’re so happy here.”

Pat and Michael Horn

Pat Horn (at right) and her husband, Michael, describe their experience in getting their daughter, Alexa, to the Wrentham Developmental Center. At left is Susan Tucker, a physician, whose brother, Danny, is also a Wrentham Center resident.

COFAR Executive Director Colleen Lutkevich, whose sister, Jean, is a Wrentham Center resident, said the legislators and others may not fully understand the true nature of the problems that afflict the DDS system today.

In recent decades, Lutkevich said, it has been the rapidly growing, privatized group home system that has exhibited serious problems with care and with abuse and neglect. State-run facilities such as the Wrentham Center and an existing network of state-run group homes have been relatively free of those problems.

Yet, the Wrentham Center has been “terribly misrepresented” in the media and by opponents of congregate care, who characterize it as an institution or as a warehouse, Lutkevich said. “What the media and many others don’t understand is that the care today is state of the art at Wrentham and Hogan (the second of the state’s two remaining developmental centers, also known as Intermediate Care Facilities or ICF’s).”

At Saturday’s COFAR meeting, some families expressed concern about rumors that DDS intends to close Wrentham and Hogan through attrition if not sooner. DDS data show that the residential population in each facility has leveled off and begun to drop. And despite the high level of care available in each, most clients waiting for care in the DDS system are not offered placements at either Wrentham or Hogan even if they ask for them.

Families waiting for residential care for loved ones are routinely offered placements only in DDS-funded, privatized group homes. The families are usually not informed even about the state-operated group homes even though those facilities have staff that tend to be better trained and better paid that than direct-care staff in the corporate-run homes.

Lutkevich and COFAR President Thomas Frain, who both attended Saturday’s membership meeting, discussed a DDS document that families waiting for residential care are required to sign, waiving their loved ones’ legal right to care in the state’s two remaining ICFs. Frain and Lutkevich maintain the document is coercive and possibly violates federal Medicaid law, which requires the state to offer all available residential facilities as care options to people who request them.

Frain went through a lengthy battle with DDS to get his brother, Paul, out of a provider-run group home, where he had been badly mistreated, and into a state-operated group home.

Families such as the Horns have been able to get their family members into Wrentham only because those family members were either literally facing life-and-death situations or because they were members of the original class-action lawsuit (Ricci v. Okin) that resulted in major upgrades to the Massachusetts DDS system in the 1980’s.

A disturbing litany of mistreatment

In the Horns’ case, their daughter, Alexa, who has Rett Syndrome, a neurological disorder, had lived at home until she was 16 and a half. At that time, the Horns explored the possibility of getting Alexa into the Fernald Developmental Center, but they were told Fernald was closing.

Pat Horn said they found a special needs residence for Alexa, but she developed a urinary tract infection and a subsequent sepsis infection there. The infections occurred after direct-care staff failed to tell the facility’s nursing staff that Alexa had not eaten or drunk anything for almost 24 hours.  Alexa was cared for in the intensive care unit at Boston Children’s Hospital for two weeks and was transferred to Franciscan Children’s Hospital for six weeks of rehabilitation.

When she turned 22, Alexa was placed in a DDS-funded group home near her family home in Watertown in which the care was quite good for a number of years. After five years, however, the residence started to experience a high degree of turnover of house managers, and new direct care staff were hired with little apparent training or qualifications.

Pat said the residence became dirty, clinician appointments were missed, protocols for administering Alexa’s medications and her feeding tube were not followed, and her personal hygiene degraded to the point that she had to be treated for ringworm, a type of fungal infection of the skin, on numerous occasions.

In 2014, Alexa fell out of her shower chair while a staff member was showering her because the staff member had undone her safety belt in order to wash her back. Her injuries required a trip to the emergency room and an MRI. Miraculously, Alexa did not sustain any serious injury in that incident, but she did suffer a significant amount of soft tissue damage to her face and broken blood vessels in her eye.

In another incident, the same caregiver failed to check the rate of the feeding pump when setting up her g-tube feed, and Alexa received 12 hours worth of food in a two-hour period, causing her to vomit and aspirate.

Early 2015, Pat said, she was informed by staff during a weekly Saturday visit that Alexa’s leg had been hurting her since the beginning of that week, but that the house manager had not taken her to be assessed by her doctor. The Horns called the manager on duty that weekend, who finally took Alexa to a hospital emergency room where an x-ray confirmed that Alexa had a fracture of the tibia.

Pat said the DPPC did a three-month investigation of the incident and substantiated a charge of mistreatment, but was unable to determine how the injury had happened. The DDS “action plan” recommended only staff retraining.

During the three-month period in which the family was waiting for the results of the investigation, Alexa suffered a fracture of her upper left arm. That injury was investigated by DDS, which concluded that she had broken her own arm as her medical record showed that she had osteoporosis. The Horns consider it highly improbable that Alexa broke her own arm.

The Horns then arranged to have Alexa sent to the Marquardt skilled nursing facility at the former Fernald Center rather than to have her discharged back to the group home.

A few weeks later, Pat said, she and Michael met with the DDS area director, Alexa’s DDS service coordinator, and administrators from the group home provider during which the Horns recounted six months worth of mistreatment that their daughter had endured. At the end of this meeting, the DDS area director said that since  Alexa would “‘undoubtedly be difficult to place,'” she might have to be sent back home to her parents. According to Pat, that “sounded very much like a threat.”

During her first months at the Marquardt, as she was recovering from her broken arm, Alexa contracted pneumonia and respiratory failure. After two weeks on a respirator at Mt. Auburn Hospital, she was transferred to a rehabilitation hospital where she contracted a ventilator-acquired pneumonia and a “C. difficile” gastrointestinal infection, and suffered from serious seizures because of the medications given to combat the infection. After two and half months, she was finally well enough to be transferred back to Marquardt.

In August of 2016, the Horns learned that the Marquardt center was going to be closed, and Alexa finally became a resident of  the Wrentham Center in February of 2017.

Yianni Baglaneas’s parents attend COFAR meeting

Also attending Saturday’s meeting were Anna and James Eves, the parents of Yianni Baglaneas, whose case sparked the Children and Families Committee hearing.

membership meeting 1.13.18

Attendees at Saturday’s COFAR meeting.

In her own written testimony to the Children and Families Committee, Anna Eves said that since the news got out that Yianni had nearly died in his group home after aspirating on a piece of cake, other people began contacting her about similar cases involving their loved ones. “As I looked further, I was shocked and saddened and outraged that this truly is an epidemic – the DPPC receives 10,000 calls a year – 10,000. And they only have five investigators, which tells you how much we as society care about this epidemic of abuse.”

During Saturday’s COFAR meeting, Kathleen MacKechnie described a difficult, eight-month process of getting her brother, Tom, into the Wrentham Center.  In her written testimony to the committee, she suggested that the committee “consider better funding
and monitoring (of DDS care) rather than budgetary cuts, and stop turning a blind eye to the problem.”

Also attending the Saturday meeting was Pat Feeley, who was nearly removed as guardian of her son, Michael, by DDS after she advocated for full-time nursing care for him.

Other attendees of Saturdays’ meeting who have family members at Wrentham included Mitch Sikora, whose brother has been at the Center for many years, and Mary McNamara, whose uncle has been a long-time resident there.

Lutkevich said she is organizing a legislative breakfast at the Wrentham Center for early March. The breakfast will be sponsored by COFAR and its affiliated family-based organization, the Wrentham Association.

Committee won’t allow DDS clients and families to speak at oversight hearing on DDS care

January 11, 2018 9 comments

On Wednesday (January 17), the Legislature’s Children, Families, and Persons with Disabilities Committee will hold what may be the first oversight hearing in its history to examine problems with care of persons with developmental disabilities in Massachusetts.

The bad news is that those individuals and their families and guardians will not be allowed to speak during the hearing.

A news release issued by the committee states that “verbal testimony” will be taken only from representatives of DDS and the Massachusetts Disabled Persons Protection Commission (DPPC). (The DPPC is an independent but seriously understaffed agency that is charged with investigating allegations of abuse and neglect in the DDS system, but which refers the vast majority of those cases to DDS itself for investigation.)

I confirmed the details of the news release today with the committee and asked a staff member to convey our disappointment in it to Representative Kay Khan and Senator Joan Lovely, the committee co-chairs.

The news release notes that DDS clients, family members, guardians, and members of the public are “invited” to attend the hearing and listen to the testimony, and are even “encouraged” to submit written testimony to the committee.  But the committee isn’t interested in hearing about their experiences directly.

This explains why the committee has devoted only half a day to this critically important issue of abuse and neglect in the DDS system. The hearing is scheduled to begin on Wednesday at 1:30 p.m. in Room A2 of the State house.  It shouldn’t take long if the committee intends only to ask questions of selected officials from DDS and the DPPC.

What we are hoping is that people will submit written testimony and request in their testimony that the committee hold another hearing so that they can testify in person. That written testimony can be submitted via email to Kay.Khan@mahouse.gov, or mailed to: Joint Committee on Children, Families, and Persons with Disabilities c/o Representative Kay Khan, State House, Room 146, 24 Beacon Street, Boston MA, 02133.

The committee scheduled the hearing in the wake of a case last year in which a young man nearly died in a DDS-funded group home after aspirating on a piece of cake.

We have been calling for years for a comprehensive legislative review of the system of care for persons with developmental disabilities in Massachusetts. The last such review was done in the late 1990’s by the Post Audit and Oversight Committee, which found problems of abuse, neglect, and financial irregularities throughout the system.

The Post Audit report stated that DDS’s oversight of privatized care, in particular, raised “grave doubts about (DDS’s) commitment to basic health and safety issues and ensuring that community placements provide equal or better care for (DDS) clients.”

Some 20 years later, as we have previously noted, it does not appear that much has changed. The association of poor oversight with increased privatization and abuse and neglect is still the case, and inadequate care and conditions remain all too common in group homes and other state-funded facilities in Massachusetts and around the country.

Unfortunately, since the Post Audit Committee’s report was issued in 1997, it doesn’t appear as if the Legislature has committed itself to grappling with these problems in a serious way. Unless and until Representative Khan and Senator Lovely agree to listen directly to the families and guardians affected by the DDS system, we don’t see much to indicate that the Legislature has gotten serious about that.