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DDS appears to look the other way as provider illegally bans guardian from daughter’s group home
Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.
Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban. Instead, the Department appears to have decided to ignore the fact that the ban exists.
The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “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,” the directive stated.
In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.
Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.
Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.” But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.
It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.
We have previously noted that 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 for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.
DDS regulations, which give DDS clients the right to receive visitors, 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.”
Enforcement of the ban raises further questions
Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.
Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.
In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.
As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.
Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.
Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.
Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.
Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.
Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.
“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.
Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.
“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.
During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”
On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”
On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.
Tens of millions of dollars in government funding
As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.
TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.
According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017. Kevin Stock, TILL vice president, received $229,988 in total compensation.
I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.
I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.
TILL’s financial and business practices have in the past been the subject of controversy. A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.
In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.
This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.
Channel 5 uncovers tip of the DDS system iceberg
A Channel 5 investigative report earlier this week disclosed that group homes and other providers of services to the developmentally disabled are often not informed about substantiated abuse allegations against individuals they hire as caregivers.
The TV news report also made the important point that abusers of disabled persons in Massachusetts are rarely prosecuted for those crimes.
In no way are we criticizing Channel 5 in saying they have uncovered the tip of an iceberg with their findings. Their report revealed more to the public about the Department of Developmental Services system than the rest of the media in the state and most state and legislative investigative authorities have revealed in recent years.
At the same time, it is important to keep in mind that abuse and neglect are only the most outward and visible signs of an overall breakdown in DDS’s largely privatized system.
It is a system that is not adequately monitored by DDS, that underpays and provides inadequate training to direct-care staff, and that overpays a padded layer of corporate provider executives. Moreover, when family members and guardians attempt to question the care and conditions in the system, they are ignored, or worse, intimidated and subjected to retaliation by both the providers and DDS.
One of those family members who has suffered apparent retaliation is Susan Fernstrom, who we just wrote about last week. Susan was banned by her daughter’s provider agency from entering her daughter’s group home after she raised concerns about poor care and conditions in the residence. The provider then sought to evict Susan’s daughter from the home.
In cases in which family members do not have guardianship rights, those persons can find themselves restricted from all contact with their loved ones, apparently indefinitely.
In the past several months, we have tried to make the Legislature’s Children, Families, and Person’s with Disabilities Committee aware of these interrelated issues. In January, the Committee did hold a brief hearing on DDS; but, as we have noted, family members and other members of the public were not allowed to speak before the panel.
We continue to hope that the Children and Families Committee will show that it is taking this situation seriously. If the Committee were serious, it would get behind legislative reforms.
One of the first pieces of legislation that we think needs to be enacted is the guardian rights bill (H. 887), which has been stuck in the Judiciary Committee, effectively since 1999. The bill would require that probate judges presume that parents of developmentally disabled individuals are the proper guardians for them. That bill, if it ever passed, would give basic rights to family members that are not currently extended to them.
We think that proposed legislation to impose fines on providers that provide substandard care or that otherwise fail to adequately respond to instances of abuse could follow from that.
The Channel 5 report discussed the need for an additional piece of legislation (S. 2213), which would establish a registry containing the names of individuals who have had abuse or neglect allegations substantiated against them by the Disabled Persons Protection Commission or other agencies that investigate those issues.
As Channel 5 noted, persons applying for caregiver positions in the DDS system currently must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states.
However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the DPPC, it does not usually result in criminal charges. As a result, those findings of substantiated abuse are not made known to providers or other agencies seeking to hire caregivers. That’s why an abuse registry is needed in Massachusetts.
We would note that such a registry needs to be designed to take into account the larger issue of the dysfunctionality of the system. Most if not all abuse occurs because upper management in both provider agencies and DDS itself doesn’t care enough about the problem to ensure that staff are properly trained and supervised.
Until executives within provider agencies are held accountable for the abuse that occurs by low-level agency employees, those low-level employees will simply continue to be replaced by other equally bad personnel.
One other thing to keep in mind is that even though the DPPC does have a backlog of abuse investigations, as the Channel 5 report pointed out, the Commission refers the vast majority of its complaints to DDS for investigation. This creates a conflict of interest for DDS, which is also supposed to be overseeing the same providers that it is now investigating.
We think the DPPC needs to be given the resources necessary to allow it to serve as a truly comprehensive and independent investigatory agency. The DPPC also needs to make its investigative process more transparent and, in that vein, make its reports available to the public.
The Channel 5 report this week demonstrates that at least one media outlet in the state recognizes that there is a serious problem with the oversight of care for a large segment of the disabled population in Massachusetts. We hope the report serves to wake up the rest of the media, the Legislature, and the Baker administration to this problem.
Advocating for her daughter’s care got a woman banned from DDS-funded group home; and her daughter got an eviction notice
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 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.
DPPC seeks to keep all investigative records in death case secret
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 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.
Donald Vitkus presented posthumously with Benjamin Ricci award
Donald Vitkus, who survived a traumatic childhood at the former Belchertown State School and then went on to earn an associate’s degree and to become a direct caregiver, was posthumously presented with the 2018 Benjamin Ricci Commemorative Award late last month.
The presentation was made by Department of Developmental Services Commissioner Jane Ryder at a March 28 ceremony at the State House in Boston. The annual award celebration recognizes the accomplishments of individuals served by DDS, and the dedication of caregivers and advocates.
Ryder will attend Vitkus’s memorial service, which is planned for June 23 at the Warner Pine Grove Cemetery Belchertown, where many of the school’s former residents are buried.
Benjamin Ricci, who died in 2006, had been the lead plaintiff in Ricci v. Okin, the historic federal consent decree case in Massachusetts in the 1970s and 1980s, which resulted in major upgrades in care at Belchertown and other institutions for the developmentally disabled around the state.
Donald Vitkus (right) presents Ben Ricci with a copy of an actual report card that Vitkus received while he was a child at the Belchertown State School in the 1950s.
Vitkus died last January at the age of 74. His life at Belchertown and afterwards was chronicled in a 2016 book, You’ll Like it Here, by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for persons with developmental disabilities and their families in western Massachusetts.
Orzechowski accepted the award on Vitkus’s behalf at the March 28 State House event.
Among those attending the event were Benjamin Ricci’s son, Bobby, who was a Belchertown resident, and Bobby’s brothers, Jim and Tom.
“Without Ben (Ricci) and the other original plaintiffs, ceremonies like this very likely would never have come to pass,” Orzechowski said following the award ceremony.
Orzechowski noted, in accepting the award for Vitkus, that he had originally met him in 2005, a year before Ricci’s death, at a book signing at Holyoke Community College for Ricci’s book, Crimes Against Humanity. The book chronicled the Ricci legal case and the conditions at Belchertown in the 1950s and 1960s.
Ed Orzechowski (center) holds a plaque commemorating Donald Vitkus’ posthumous receipt of the Banjamin Ricci award on March 28 at the State House. From left are DDS Commissioner Jane Ryder and Ricci’s sons, Jim, Bobby, and Tom.
After Ricci’s presentation at the book signing, Vitkus approached Orzechowski, who had been assisting Ricci at the event, and asked if he would help him write his life story. At the time, Vitkus was a 62-year-old human services student at HCC, the oldest student enrolled at the school. Orzechowski said he later learned that it was Vitkus, as president of the college’s psychology club, who had invited Ricci to speak.
Orzechowski also recounted that Vitkus was a six-year-old foster child when he arrived at Belchertown in 1949, where he was labeled a “moron” in an age when “idiot,” “imbecile,” and “moron” were clinical terms.
While Vitkus was growing up at Belchertown, “he stood up not only for his own rights, but also for other residents who were being abused or neglected,” Orzechowski said. “This ‘moron’ earned his associate’s degree and became a uniquely qualified direct caregiver, one who knew what it was like to be treated as less than human. Donald wanted his story told, ‘… so people wouldn’t forget—so it wouldn’t happen again.’”
Orzechowski maintained that “despite the scars of his upbringing, Donald persevered.” After Belchertown, he was drafted into the United States Army and served in Viet Nam. He married, raised a family, and held a job in the printing industry for more than 30 years.
Orzechowski said Vitkus told him that, initially, he resented Ben Ricci and what was originally the Belchertown Friends Association because the precedent-setting lawsuit brought changes long after Vitkus had left the institution. But, said Orzechowski, Vitkus “harnessed that bitterness, eventually became vice president of Advocacy Network, and a passionate spokesperson for the rights and care of developmentally disabled individuals.”
In recent years, Vitkus said he wanted to be buried in the Belchertown State School cemetery that had been known to the residents of the facility as Turkey Hill. “I want to be with the others because those people are my brothers and sisters,” he said.
Orzechowski said that while at HCC, Vitkus shared his experiences with the much younger students, “who had little or no idea about what conditions in state institutions used to be like—the squalor, the beatings and molestation, the regimented, de-humanizing environment.”
Orzechowski noted that Vitkus spoke to high school students about self-advocacy and spoke to newly hired DDS employees at orientation sessions in Northampton, always introducing himself: “Hello, my name is Donald Vitkus. I’m a former retard of Belchertown State School.”
“These were heart-filled, gut wrenching talks, always with the dignity of the individual uppermost in Donald’s mind,” Orzechowski said. “It wasn’t unusual to see tears in the eyes of those who heard his story.” Vitkus also traveled to Washington, D.C., to speak at annual VOR conferences with attendees from across the country. He was a panelist in a discussion of “The R Word.” He visited Congressional offices to lobby for supportive legislation and funding.
After earning his degree, Vitkus worked for Sullivan Associates in Springfield, providing direct care. “He wanted to help individuals make their own decisions, learn how to handle money, how to cross the street, how to shop, how to behave in restaurants—practical day-to-day living skills,” Orzechowski said. “He never talked down to them. He always sat with them at mealtimes, and beside them in transportation vans. He was firm when he had to be, but always mindful of their dignity, always kind in his words.”
Orzechowski said many of those who attended Vitkus’s book events had aunts, uncles, and cousins who also had been Belchertown patients. Others had worked or volunteered there.
At one bookstore, he said, “I watched an elderly woman seated in the crowd, trying to hold back tears. Donald liked to ask people what had brought them there, and when he asked this particular woman, she was so emotional that words wouldn’t come. The room was silent. Donald walked over and embraced her with an empathy that didn’t need words to convey—this from a man who had shunned physical contact because of the beatings and physical restraints he had endured in the institution. It was a powerful moment.”
On another occasion, according to Orzechowski, a mother brought her middle-school son who was afflicted with autism. “The boy locked onto Donald’s comments,” Orzechowski said.
The next day, the boy’s mother told Orzechowski that her son, who is ordinarily non-communicative, couldn’t stop talking about Vitkus in the car on their way home. He told his mother “that he wanted to grow up to be like Donald, to stand up for others with intellectual disabilities, that Donald was his inspiration.”
Alleged union bashing by CEO of DDS provider confirms the plan is keep direct-care wages low
We hope a federal investigation of Triangle, Inc., a corporate provider to the Department of Developmental Services for alleged anti-union activity brings public attention to the potential for privatization of DDS programs to result in low pay for provider staff and poor care.
In our view, the alleged efforts by Malden-based Triangle’s management to block staff from unionizing imply an implicit acknowledgement by the management that it wants to keep direct-care wages low. Low wages, in turn, result in lower-quality care.
In preventing their workers from organizing, providers like Triangle appear to be pitting themselves against the growing movement in Massachusetts for a $15 living wage for workers.
The Boston Globe reported earlier this month that the National Labor Relations Board has issued a formal complaint against Triangle after at least three former employees of the provider were allegedly fired for helping organize the agency’s staff to unionize with SEIU Local 509. The union represents both state workers and staff of state-funded providers to agencies such as DDS.
Triangle’s chief executive, Coleman Nee, allegedly stated that anyone in the agency who even voiced support for the union could be fired. Nee is a former Cabinet secretary under then Governor Deval Patrick.
The relatively low level of pay and benefits to direct-care staff in human services has been a long-standing issue in Massachusetts and elsewhere around the country.
“Nonprofit DDS providers do not want to pay a living wage to their direct care workers because their CEOs are keeping the money for themselves,” COFAR Executive Director Colleen Lutkevich wrote in a comment on the Globe site. “It can only benefit people with developmental disabilities if unions help these workers to earn more money. The management is a disgrace and it’s not the people they serve that benefit, it is their own pocketbooks.”
COFAR and SEIU Local 509 have tracked both corporate provider executive and direct-care compensation in recent years. Last May, the SEIU released a report charging that major increases in state funding to corporate human services providers during the previous six years had boosted the providers’ CEO pay to an average of $239,500, but that direct-care workers were not getting a proportionate share of that additional funding.
As of Fiscal 2016, direct-care workers employed by the providers were paid an average of only $13.60 an hour, according to the SEIU report.
The SEIU further noted that the increases in funding to the providers, known as “Chapter 257” rate setting reforms, had actually allowed the providers to earn $51.8 million in net or surplus revenues (over expenses) in Fiscal 2016. As the report stated, those surplus revenues would have more than covered the estimated $34 million cost of boosting all direct-care workers’ wages to $15 per hour.
Based on that report, state Senator Jamie Eldridge filed a budget amendment last year to require human services providers in Massachusetts to spend some of their surplus revenues on raising direct-care wages to $15 per hour. The measure was rejected, however, by a House-Senate conference committee on the budget.
It was not clear whether Eldridge intends to refile his amendment this spring. The SEIU as well has turned its attention away from that proposal and toward proposed legislation and a proposed ballot question in November that would raise the minimum wage for all workers in Massachusetts to $15 per hour.
While we support the legislation and ballot question aimed at all workers, we would also hope that Eldridge’s amendment would be reintroduced given that the funding apparently already exists to fully fund a $15 per hour living wage for human services workers.
Privatized human services reflect larger inequities
The privatized human services system in Massachusetts, in fact, reflects income inequities and other problems with privatized services in other areas of the economy.
As state funding has been boosted to corporate providers serving DDS and other human services departments, a bureaucracy of executive-level personnel has arisen in those provider agencies. That executive bureaucracy appears to be suppressing wages of front-line, direct-care workers and is at least partly responsible for the rapidly rising cost of the human services budget.
Ironically, a key reason for a continuing effort by the administration and Legislature to privatize human services has been to save money. However, we think that privatization is actually having the opposite effect.
Triangle executives are lavishly compensated
Triangle Inc. appears to be a microcosm of the human services system in Massachusetts, and to reflect many of its problems.
The Globe reported that Triangle had some 3,900 people enrolled in various programs and services during Fiscal 2017. The agency received $10.2 million in revenue in Fiscal 2017, including $6.9 million in funding from DDS, according to the state’s online UFR database.
Coleman Nee, the Triangle CEO, is listed on the UFR database as having received $223,570 in total compensation in Fiscal 2017. That may not cover an entire year with the agency.
It appears Nee started with Triangle sometime in 2016. Prior to him, the CEO was Michael Rodrigues, who made $257,442, according to IRS Form 990 for Fiscal 2016. That year’s Form 990 lists six executives, including Rodrigues, as making over $100,000 at Triangle.
It is unconsionable that executives of nonprofit agencies who are making six-figure incomes paid for with state funds are engaging in efforts to supress the pay of their direct-care employees. The fig leaf offered by a nonprofit moniker does not protect those executives from either charges or the appearance of profiting inappropriately off the taxpayers.
Its’s time for the Legislature to take steps to reform the DDS system, starting with a concrete action to raise direct-care wages.
Wrentham Center supporters want you to to know: ‘It’s a community’
As is the case with many of the staff at the Wrentham Developmental Center, John Maxell, supervisor of adapted physical education, sees his job as serving both the center’s residents and the surrounding community.
Maxell noted, for example, that he has been working at WDC with a man from the community who originally weighed more than 500 pounds and came to him for help in losing weight.
That man’s weight is now close to 300 pounds, Maxell said, and it is continuing to drop. Maxell made the comments to state legislators and others who were on a tour of WDC following a legislative breakfast there this past Tuesday.
The breakfast was hosted by State Senator Richard Ross of Wrentham and was co-sponsored by the WDC Board of Trustees and by a range of family-based groups including the Friends of Wrentham, COFAR, the WDC Family Association, and the SpeakEasy Advocacy Group at WDC.
“I invite you to look at WDC with new eyes,” Colleen Lutkevich, COFAR executive director, told the lawmakers, staff of the Department of Developmental Services, and family members who attended the legislative breakfast. “WDC is a true community.”
Lutkevich noted that she was speaking on behalf of her sister, Jean Sullivan, who has been a WDC resident for more than half a century.
In addition to Ross, legislators who attended the breakfast included Senator Paul Feeney of Attleboro; and Representatives Shawn Dooley of Medfield, Elizabeth Poirier of Attleboro, and Jeffrey Roy of Franklin.
State Senator Richard Ross (at podium) speaks during legislative breakfast at WDC.
Maxell pointed out that other people and groups from the surrounding community also use the fitness center at WDC, including members of local high school and community basketball, volleyball, and badminton teams. In return, those groups provide the center with monetary donations, which are used to buy exercise equipment for use by the center’s residents.
Similarly, community-based groups and individuals, including senior citizens, regularly use the therapeutic swimming pool at WDC, according to Peter Cutting, the lifeguard there.
Peter Cutting, lifeguard at the WDC therapeutic pool. The pool is used regularly by members of the surrounding community.
Joanne Cummings, a member of the WDC Board of Trustees, who spoke at the breakfast, listed the services that are provided to the 263 residents at WDC, including clinical, medical services, nursing care, occupational and physical therapy, speech and language therapy, recreation therapy, and psychological counseling. The center also houses an acute care medical facility and a dental clinic.
Yet, while that array of centrally located services cannot be found in any community-based group homes in the commonwealth, WDC doesn’t necessarily have an institutional feel to it. The campus has a mix of larger buildings housing apartments and smaller, multi-bedroom homes.
As Cummings noted, “The facility of today is not the institution of the past.”
And yet, WDC and its community-based orientation are a “well-kept secret” by DDS, Lutkevich pointed out. Many family members and guardians have waited for residential placements from DDS for years without being informed that places like WDC, the Hogan Regional Center, and a network of state-operated group homes exist.
Lutkevich discussed the case of Alexa Horn, who was admitted to WDC only after the Marquardt skilled nursing facility on the grounds of the former Fernald Developmental Center, in which she had been living, closed. Prior to being admitted to the nursing facility, Alexa had suffered an unexplained broken leg and arm in a corporate-run group home funded by DDS.
Lutkevich recounted how Alexa’s parents, Pat and Michael Horn, told DDS while Alexa was at Marquardt that they did not want her sent back to the group home. But instead of promising to address and rectify the situation, a DDS official threatened the Horns with removing their daughter from DDS care and sending her back home. Luckily, that never happened. Pat Horn has described the care Alexa has received at WDC as “exquisite.”
Other parents have been able to get family members into WDC or into state-operated group homes only after hiring attorneys and engaging in legal action, Lutkevich said.
Since 2008, four of six remaining developmental centers in Massachusetts have been closed, leaving only WDC and the Hogan Regional Center in Danvers operating. A number of current WDC residents were transferred there from the closed centers, including Tom Doherty, who was on hand for Tuesday’s breakfast.
Doherty, who is 67, moved to WDC from the former Templeton Developmental Center in 2011. He now lives with four other men in a group home on the WDC campus.
Tommy Doherty (left), who became a resident of WDC in 2011, with his cousin, John Hastings, at Tuesday’s legislative breakfast.
The developmental centers, which are also referred to in federal regulations as Intermediate Care Facilities (ICFs), are required to comply with more strict federal requirements for staffing and treatment than are community-based group homes. As a result, WDC and Hogan tend to have residents who are older and have more severe developmental disabilities and medical conditions on average than those in the community-based system.
The average age of the residents at WDC is 66. More than 90 percent of the residents there are over 55. Eighty-five percent of the residents at WDC are listed as having either a severe or profound level of intellectual disability as compared with 15 percent who have either a moderate or mild level of disability.
Due to that relatively old residential population and the fact that new residents are not routinely admitted to WDC or Hogan, the residential census in those facilities is dropping. At WDC, the residential census dropped from a peak of 323 in Fiscal 2013 to 272 at the start of the current fiscal year last July. Since July, that number has dropped by an additional 9 residents to 263 as of this month.
As Lutkevich stated in a message to the legislators who attended the breakfast this week, the push is on to change attitudes within the Legislature and administration about the continuing need for WDC, Hogan, and the state-operated group homes as part of DDS’s overall continuum of care. “Ultimately, we hope to find a way to persuade DDS and other policy makers to make WDC and other state-run programs available once again as options for care for people waiting for DDS services,” Lutkevich said.
Our March issue of The COFAR Voice discusses a plea from DDS families: ‘please listen to us’
The theme running through our new March newsletter is the continuing struggle by families to be listened to by state policy makers, legislators, service providers, probate court judges, and the media as those families work to ensure the wellbeing and safety of their loved ones in the Department of Developmental Services system.
It is a struggle that families must engage in constantly. And as a number of the articles show, the system is often not willing to listen. Families frequently encounter significant pushback from DDS, the courts, the providers, and other quarters.
David and Ashley Barr have been subjected to an outright ban for more than two years on contact with David’s daughter who is being kept isolated in a group home in an undisclosed location. The prohibition seems to us to clearly violate DDS regulations that give clients the right to be visited.
When the Tillys filed complaints about abuse and neglect of their son in a corporate-run group home, both the provider and DDS turned against the parents instead of putting their focus on investigating and addressing their complaints. The Tillys, too, faced restrictions and then bans on visits to their son.
David (left) and Richard Buckley circa 1970
When Richard Buckley and his family tried to seek justice and get answers from DDS and the Essex County District Attorney’s Office after Richard’s brother, David, was scalded to death in a DDS group home in 2001, they got only silence. Richard is still waiting for someone to listen.
The state Legislature’s Children and Families Committee, recently held an oversight hearing to consider DDS’s responses to these types of incidents and issues. But it seemed the committee wasn’t really interested in hearing from the families either.
Verbal testimony was permitted at the committee’s January 17 hearing only from DDS commissioner Jane Ryder and from Nancy Alterio, executive director of the Disabled Persons Protection commission. To date, the co-chairs of the Children and Families Committee have not given any indication when, if ever, they will listen to the families.
But it’s not only the Children and Families Committee that does not appear to be listening. We report in the March issue on the continuing failure of the Judiciary Committee to act on a bill that would boost family rights in guardianship cases.
We believe there is a connection between these issues and the continuing priority the administration and Legislature have placed on privatizing the DDS system. The March newsletter also reports on the governor’s budget for the coming fiscal year and how it continues to short-change state-operated group homes and other state-run DDS programs.
And we have a report on our concerns about new regulations proposed by the state auditor that might weaken the Pacheco Law, a state statute that requires state agencies to demonstrate a cost savings and quality improvement prior to privatizing existing services.
We do appreciate that at least one legislator has been listening to a constituent about the problems her developmentally disabled son has had since his sheltered workshop was shut down in 2016. As we report, Representative Brian Ashe’s staff is drafting a bill that would bring back work opportunities to day programs for DDS clients who are not able to function in mainstream work environments.
Finally, we discuss the passing of two key figures in the history of care for the disabled in Massachusetts — Donald Vitkus and Edward Stefaniak. Donald was a survivor of the former Belchertown State School who went on to become a committed advocate for persons with intellectual disabilities.
Ed Stefaniak, who served as COFAR’s treasurer for many years, was instrumental in the Ricci v. Okin class action lawsuit, which resulted in major upgrades to developmental centers in the state and opened the way to community-based care.
You can find all of this and more in the newsletter, which you can access on the home page of our website at www.cofar.org. Your feedback and comments are much appreciated.
Father and sister now told they must wait for long-delayed trial before they can visit disabled woman
The state’s story keeps changing as to why the father and sister of a developmentally disabled woman have been banned for more than two years from having any contact with her.
The woman, whose name we are withholding, has been kept in virtual isolation by the Department of Developmental Services since her mother’s alleged boyfriend was charged in 2014 with sexually assaulting her. The woman’s mother has also been charged in connection with the alleged assault.
However, since November 2015, both David and Ashley Barr, the woman’s father and sister, have been prohibited from having any contact with her and have not even been told where she is living. Neither Ashley nor David has been charged with any crime. David has been divorced from the woman’s mother since 2003.
As of this past week, Ashley Barr was being told she and her father would not be able to visit the woman until her mother and her mother’s alleged boyfriend are tried in connection with the alleged sexual assault. The trial, which has apparently been delayed at least once, is now scheduled for May 15, according to the office of Essex County District Attorney Jonathan Blodgett.
Ashley said the reason given her for waiting for the trial was unclear. She said DDS General Counsel Marianne Meacham told her last week that there was concern on someone’s part that a visit from her father and her would somehow make her sister “lose focus” in preparing for the trial.
Ashley said Meacham had initially told her the trial would be held in April.
David and Ashley Barr
In an email this week, Carrie Kimball-Monahan, director of communications for the Essex District Attorney’s Office, said the district attorney was not responsible for the ban on family contact. Kimball-Monahan said the ban was ordered by Dorothy Wallace, the woman’s DDS-paid guardian.
Kimball-Monahan added that the district attorney was not in a position to try to resolve the visitation issue with DDS. “We are prosecuting a criminal matter and that is our focus,” she stated.
In previous comments in probate court, Wallace stated that she was imposing restrictions on contact between the woman and her father and sister because David and Ashley became overly emotional when they had been allowed to visit her. Wallace made no mention during the probate court hearing, which was held in August 2015, to the ongoing criminal prosecution involving the woman’s mother and alleged boyfriend.
Ashley said she is not convinced anyone in the system cares whether she and her father ever see her sister again.
Wallace received $20,100 from DDS for guardianship services for an undisclosed number of persons in Fiscal Year 2016, according to DDS records. Yet, Wallace appears to have had relatively little contact with the disabled woman in this case over the past year, according to records and other information reviewed by COFAR.
A violation of DDS regulations
The continued isolation of the woman in this case appears to involve a violation of DDS regulations, which state that people in the Department’s care have the right …“to be visited and to visit others under circumstances that are conducive to friendships and relationships…” The only limitation on this right is if the individual “is ill or incapacitated to the degree that a visit would cause serious physical or emotional harm.”
Also, the right to visitation is a key aspect of family integrity in international human rights law. As an article in the Berkeley Journal of International Law states, “Sufficient consensus exists against particular types of family separation…to constitute customary international law.”
In an email sent February 10 to Meacham, Lutkevich asked whether DDS would provide a letter stating that Ashley “will in fact be able to see her sister after the trial…I truly hope there is a full intention of allowing these visits to occur,” Lutkevich added, noting that the probate court has not issued any orders barring visitation with the woman.
Meacham had not responded to Lutkevich’s message as of today (February 13.)
The Barrs have been unable to afford the cost of hiring a lawyer to pursue their case in probate court. As we have reported in another case, it is extremely difficult to prevail in any probate court proceeding in Massachusetts if you are not a legal guardian or appear without a lawyer.
David and Ashley have asked their local state legislators to intervene with DDS to allow visits, but have gotten little or no help from them. Despite requests from the Barrs and from COFAR, mainstream media outlets have not reported on the ban on family contact in the case.
As we reported in January 2017, the Boston-based Disability Law Center temporarily intervened in the case that month to ask a state-appointed attorney, who is representing the woman, to support family visits if the woman wished that. However, the attorney didn’t agree to do so.
The attorney, Melissa Coury Cote, told COFAR in March 2017 that she would not support court permission for visits to the woman by David or Ashley Barr, despite the DLC’s request. She provided no reason to us for opposing family visits other than to say that the woman had not specifically asked her to allow visits from her father and sister.
Ashley said, however, that her sister has, on occasion, surreptitiously tried to call her and her father from her undisclosed location.
17 years later, a man hopes some good will come of his brother’s scalding death in a DDS group home
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 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.
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.
COFAR blog 