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Father points out the personal impact of our neglect of adequate wages for caregivers
While the state provides almost $2 billion a year to privately run corporations to deliver a wide range of services to people with developmental disabilities, policy makers and legislators have historically been reluctant to fund even small increases in wages to actual caregivers.
In the case of parents of children with disabilities, the state provides no financial remuneration at all. At least one of those parents would like to see that changed.
We’ve written before about John Summers and his efforts to care for his non-speaking, autistic son Misha. In an opinion piece in The Boston Globe on May 18, Summers talks about the difficulty he has had in finding Personal Care Attendants (PCAs) to come to his home to help him provide daily care to Misha.
That difficulty Summers is facing is due to an ongoing staffing shortage that has afflicted virtually every facet of the state’s human services system since the start of the COVID pandemic some three years ago.
But there’s more to it than the lack of available staff. Summers, as a caregiver himself to his disabled son, receives no financial help from the state to do that work even though caring for Misha required him to leave his job and has dropped his income below the poverty line.
We have on many occasions called for adequate wages, benefits, and training for direct caregivers in the provider-run group home system funded by the Department of Developmental Services (DDS). The same neglect of the caregiver role exists when it comes to the funding of services to people living in their private homes, which is ostensibly where the state wants disabled people to live.
As Summers notes, “the concept (of PCA services) reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care.” Yet Summers contends the system as practiced today “cheats “ caregivers like himself.
Parents should be paid as caregivers
MassHealth allows consumers to hire just about anyone they want, including friends and relatives, to provide personal care services to themselves or others in their homes. But so-called “legally responsible relatives,” particularly parents, are barred from receiving state funding for caregiving.
As Summers points out in his article in the Globe, payment to legally responsible relatives is prohibited by the federal Medicaid law. But the state’s Home and Community Based Services (HCBS) waiver allows for the development of state programs that don’t meet specified Medicaid requirements. Payment of parents as caregivers is one such practice that can be permitted under the waiver. So far, however, MassHealth has not sought such permission from the federal government.
According to Summers, state legislators have filed bills since 2015 to allow legally responsible relatives and guardians to be paid for caregiving services. One such bill, S.775, is now before the Legislature’s Health Care Financing Committee.
Governor Healey, however, could act as well to seek such a waiver. Given the ongoing staffing shortage among PCAs and other caregivers, it would make a lot of sense to do so.
Governor labels PCA staffing shortage a priority
Summers points out that Governor Healey has pledged to place the “crisis-level” staffing shortages in the MassHealth Personal Care Attendant Program at the “top of her list.”
It is currently unknown, however, how many of the tens of thousands of persons who are enrolled in the state’s PCA program aren’t receiving PCA assistance due to the staffing shortages. The Healey administration needs to get a handle on that number for a number of reasons.
State funding for PCAs unspent
Summers, for instance, provided us with data he received from MassHealth on May 23, after he had filed a Public Records request for it. The data show the state appropriated more than $432 million in funding for personal care attendant services between 2012 and 2022 that was never spent, apparently because of a lack of available PCAs.
There is a keen irony here. More PCAs would become available if they were paid a living wage for their work. Instead, they are paid just $18 an hour, pursuant to a recent collective bargaining agreement.
The irony is that the $432 million in unspent funds implies there is enough money to boost the pay of caregivers in the human services system. While we have called for a raise to $25 an hour, Summers has suggested $50. So far, no one seems to have information on how much money is available or actually needed to fully address the direct-care wage problem.
Bureaucratic, privatized structure
What the state has done has been to perpetuate a privatized bureaucracy to administer the PCA program, just as it has built a largely privatized group home system funded by DDS. Summers believes the bureaucratic hurdles that the state has imposed have further discouraged people from applying to become PCAs and have led many to leave that profession.
As Summers points out, PCAs are paid though Tempus Unlimited, Inc., a private “fiscal intermediary.” Those workers will soon have to submit to a potentially intrusive process called Electronic Visit Verification, which is administered by Optum, another private firm.
It seems the state and federal governments are using the Electronic Visit Verification system to target PCAs for potential fraud. But are individual PCAs really committing most of that fraud, or does PCA fraud primarily take the form of improper billing by managers of the PCA provider companies? As usual, the direct care workers get few of the benefits of the system in which they work, but incur most of the blame. It’s apparently good politics.
Misplaced priorities
In sum, it appears the state has over-funded the PCA line item each year for the past 10 years, apparently due to continuing staffing shortages. Yet, the state could have used that funding each year to raise the hourly wages of the PCAs, which might have helped solve the staffing shortage problem.
There is also clearly more than enough funding available to pay parents such as Summers to enable them to care for their disabled children so that those parents are not forced into poverty.
It is not clear that the state has a handle on the extent of the PCA staffing shortage either or on the extent of potential fraud in the system. Yet, the state has created a privatized, bureaucratic administrative process for its PCA program that appears intended to inconvenience and place the blame on the very people who are the key to making the system work – the parents and caregivers.
We hope that in placing the PCA problems at the top of her list, Governor Healey will recognize and work to correct these misplaced priorities.
After being cleared of abuse, mother continues to face restrictions in contact with her son
More than a year after the state rescinded an abuse charge against Christine Davidson for allegedly having given her son too much Tylenol and cough syrup during a weekend visit home, the Department of Developmental Services (DDS) is continuing to restrict her contact with her son, she says.
Christine said DDS officials and managers of the corporate provider running her son John’s group home in Waltham are continuing to restrict the amount of time on weekends that John can come home to visit her.
Christine’s case appears to fit a pattern in which DDS and its providers have placed restrictions or bans on family contact with loved ones in the DDS system for questionable reasons. (See here, here, here, and here.)
Christine said she has been told by two of the managers of the corporate provider, WCI, Inc., that “it depends on how I behave” as to whether John can stay home with her for more than one night on weekends. She said the implication is that she can’t be trusted in caring for her son, particularly in giving medications to him.
Christine Davidson and her son John
Christine said the continuing lack of trust in her appears to stem from an abuse allegation against her, which the state Disabled Persons Protection Commission (DPPC) had initially determined was “substantiated.” The agency later reversed that determination.
Christine faced the abuse charge after she was unable to wake John up in the morning of June 21, 2021. She called 911 that morning, and John was brought to the Newton Wellesley Hospital emergency room. He quickly recovered after being given oxygen.
In an investigative report issued in October 2021, the DPPC concluded that John’s hypoxemia or low oxygen level had likely been caused by Christine because she had allegedly given him an “undetermined” amount of cough syrup and Tylenol that weekend, and had failed to have him use a prescribed breathing assistance machine at night.
COFAR examined the DPPC’s investigative report and reported in January 2022 that the Tylenol and cough syrup with codeine that Christine had provided her son had been prescribed by his primary care doctor, and that there was no evidence presented by the DPPC that she did not follow the prescriptions. COFAR also noted that the group home had, at the time, failed to deliver the required nighttime breathing equipment for John to Christine’s home or to train her in how to use it.
Christine was represented in appealing the abuse substantiation by Thomas J. Frain, COFAR’s president, who is an attorney.
Following the initial substantiation of the abuse charge in October 2021, all visits to Christine’s home by John were suspended, and all of Christine’s visits to the group home were required to be supervised. John was not even allowed to go home to visit Christine on Christmas in 2021.
But in February 2022, the DPPC, in a rare reversal, essentially agreed with COFAR’s findings, and changed the abuse designation from “substantiated” to “unsubstantiated.” In a letter rescinding the abuse charge, a DPPC assistant general counsel stated that he “(did) not find that the conclusions of the (investigative) Report were supported by the weight of the evidence.”
Home subject to cockroach infestation
Christine has, meanwhile, continued to blow the whistle on allegedly poor care and conditions in the group home. Last year, two medical specialists backed up her claims that her son was not receiving needed physical therapy in the residence and was declining physically there. Her allegations about those issues, however, do not appear to have been investigated by the DPPC.
In February of this year, John’s group home was shut down for a month due to a cockroach infestation, leading DDS to order WCI to assess all of its group homes for “any hazards.” During the shutdown, John and four other residents were relocated to a hotel in Woburn.
Christine said that both she and her son had repeatedly complained to WCI in previous months about the roaches and about other allegedly unhygienic conditions in the residence.
Blame placed on Christine
Christine said John’s clinical team, which includes DDS and provider employees, has continued to treat her as if she is not responsible enough to care for her son without continuing restrictions and supervision.
Christine said that after the group home was reopened in March following the insect infestation, the clinical team permitted John to stay overnight at her home only on one night each weekend. She said the group home staff would drop him off each Saturday at 11 a.m. at her house, and pick him up on Sunday at 7 p.m. Yet, she said, John didn’t want to return to the group home on those Sunday nights.
This past weekend, the clinical team agreed to begin alternating between one-night and two-night weekend visits home for John. But Christine said those decisions have been made without her or John’s input, and that the clinical team does not appear to take John’s preferences into account. The team decisions, she said, “are an insult to John and to me too. I’ve done everything I could for him, all his life.”
Christine said the clinical team decisions are not in writing, but have been conveyed to her by WCI management personnel.
Decisions are made in conjunction with co-guardian
Christine said that while she has no input into the clinical team decisions, a nephew of hers, who was appointed as John’s co-guardian, is regularly consulted in the decision-making process.
Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in what was then a new group home.
In a settlement of the matter, Christine was allowed to remain as co-guardian, and her nephew, George Papastrat, who lives in North Carolina, was appointed as John’s second co-guardian, with all medical and residential decision making powers.
Christine said that whenever she requests changes in John’s placement or asks for increased visitation, she is told by DDS that Papastrat must agree to it. But she said she feels she has no influence on Papastrat.
While Christine may not have formal decision-making power under the co-guardianship decree, it is clear that she has her son’s best interests at heart and that she has always fought for adequate care and services for him. It also appears that the clinical team does not fully understand the severity of the problems with care and conditions in the group home.
We think that at a minimum, the members of John’s clinical team should rethink their presumptions regarding Christine’s ability to care for her son, and she should be consulted in all decisions regarding his care. Moreover, there is no reason, as far as we can see, to continue to impose restrictions on Christine’s contact with her son.
Mass Arc echoes our concern that DDS faces ‘systemic failure’ in providing services
Almost two years ago, we first reported that direct care staffing shortages were causing a potentially serious deterioration in residential and day program services in the Department of Developmental Services (DDS) system.
We have also reported repeatedly that the ongoing staffing shortages have caused worsening conditions in the group home system and a lack of meaningful activities in community-based day programs.
Now, the Arc of Massachusetts — an organization that lobbies for DDS residential and day program providers — is echoing our concerns. GBH News, citing the Arc, reported on April 27 that “up to 3,000 Massachusetts residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields.”
The public radio news outlet quoted Maura Sullivan, a senior Mass Arc official, as saying:
There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases. (my emphasis)
We would emphasize that we believe that thousands of Massachusetts residents are waiting not only for day program services, but for residential placements as well. In her remarks, Sullivan did not refer specifically to day program services, but to a lack of services in general.
The resources may be there
What the Arc isn’t saying is that the corporate providers are well funded in the state budget. The provider residential line item will have grown from $847 million, ten years ago, to more than $1.7 billion, under Governor Healey’s Fiscal Year 2024 budget proposal.
We think there is sufficient funding in the DDS system to provide needed services. It’s just that DDS isn’t using the resources in an optimal way. An example of that is DDS’s neglect of the ICFs and state-operated group homes as potential resources.
We have suggested to families whose loved ones are either receiving substandard services or are waiting for services that they ask DDS for placements in either the state-run Wrentham or Hogan ICFs, or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
While the state has continued to pour money into the corporate provider system, the number of residents in the state’s state-operated group homes and state-run ICFs have continued to drop.
As of the fall of 2021, we heard that state-operated group homes were being closed, and last month, we received records from DDS indicating that those closures were the result of insufficient staffing of corporate provider-run group homes. Yet, the records also indicated that the state-operated group homes continued to have vacancies.
Poor pay of direct care workers not the result of a lack of resources
We agree with the Arc that the human services direct care workforce continues to be grossly underpaid, and that this is a primary reason for the continuing staffing shortages.
Where we disagree with the Arc is that it once again doesn’t appear to us that the problem of low pay for direct care workers is necessarily due to a lack of resources.
The increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We hope the Healey administration is open to a new approach to this problem. The new administration needs to redirect more of the state’s resources to state-run programs, and needs to ensure that those resources get to those who underpin the entire system — the direct care workers.
Mother gets little response to concerns about care of her disabled son in group home
Early on a Saturday morning last June, Ian Murawski phoned his mother Rachel Surner from his group home in Ashland, where he had been living for about a month.
Ian, 30, has an intellectual disability and has spastic quadriplegia, a condition that has left him with the limited ability to move only his arms. He is a talented singer, however, and Rachel describes him as having “amazing harmonies.”
It was 5:30 in the morning, and Ian said he needed to urinate, but that his bedside urinal was out of his reach. Rachel suggested he ring a bell near his bed, but Ian said the bell had fallen on the floor. She said she advised her son to yell for help.
About 15 or 20 minutes later, Rachel texted Ian asking if he had gotten help. He said “no”; so, at 6:45 a.m., she drove to the Ashland residence from her home about 10 minutes away in Holliston.
Rachel said that as she stood at the front door of the group home, waiting for someone to answer, she could hear Ian yelling inside for help. The home is run by the Justice Resource Institute (JRI), a corporate provider to the Department of Developmental Services (DDS).
Ian and his mother Rachel
After she rang the bell, a staff worker came to the door. She said she explained she was Ian’s mother, and Ian had been calling for help since 5:30.
No answer, just ‘intimidation’
Rachel said the staff worker did not want to let her in, but she brushed past him and walked inside anyway. “At that point, I was going in to help my son and find out why he didn’t have the things he needed or wasn’t getting help.”
She said that when she went into her son’s room, she saw that his urinal, which was supposed to be on his bedside table, was on the floor.
She brought the urinal to her son and tried to leave the room to give him privacy. But she said the staff member was now blocking the door to the bedroom and wouldn’t move to let her out.
When she insisted on being allowed to leave the room, the staff member reluctantly moved slightly to let her out. She said he then asked her to go stand by the front door and stated, “’You can’t just come here, just show up at any time.’”
“I informed him that Ian had been requesting help since 5:30,” Rachel said. “I asked why he was not assisted, but I got no answer, only a demand, intimidation and questions back.” She said the staff member did at one point say he was unaware Ian needed help, “to which I informed him that I could hear him while I was standing at front door!”
All of the details related above were contained in an email that Rachel sent on June 20, two days after the incident, to multiple DDS and JRI officials. She said she received no immediate response from anyone to her email.
On June 28, eight days after Rachel had sent her email, Ian’s then DDS service coordinator, emailed many of the same officials to express concern that JRI was not directly responding to Rachel’s concerns.
“If Ian is in distress in any way, please let us know!” the service coordinator’s email stated. “We would like to be aware so we can talk as a team and see if there are additional supports we can put in place to help… I also think we should hold another larger team meeting just as a check in, to hear Rachel’s observations and see if we can change our approaches moving forward.”
Rachel said the service coordinator later left to work in another DDS area office closer to where he lives.
Problems throughout provider system
Rachel is one of many family members and guardians of DDS clients who have been contacting us in recent months about what appear to be worsening conditions in the Department’s provider-run group home system.
We have suggested to Rachel and many other parents that they ask DDS for new placements for their loved ones in either the state-run Wrentham or Hogan Intermediate Care Facilities (ICFs), or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
In most of these cases, the care issues we hear about are numerous and interrelated.
Need for intensive care
Ian had encephalitis when he was a baby, which caused brain damage, cognitive delays, and mental health issues, Rachel said. He doesn’t require a ventilator or g-tube or significant drugs other than mental health medications. But he does need intensive physical care.
Rachel said her son can feed himself, but he can’t shower or toilet himself. She said he has been left at times by the staff to sit in his urine and feces.
Rachel said that while Ian has needed periodic psychiatric hospitalizations, she hasn’t been able to get him placed in most psychiatric hospitals because he is quadriplegic and requires too much care. He has been admitted to Mass. General Hospital on occasion, she said, but only when she has brought him directly to the ER “which is often very hard to do during a crisis situation.”
Prior to moving to the group home, Ian had lived at home. From age 10 to 18, he was at the Mass. Hospital School in Canton.
Rachel said Ian requires 1-on-1 care, but he is not getting that in the group home. There are supposed to be two staff members available when he’s at the house, but sometimes there is only one staff there to care for him and one or more other residents. His group home has four residents. The other residents are able-bodied and high functioning.
Last year, Rachel reported to DDS that Ian had bed sores. She said she has not been informed as to whether the Department investigated the matter or issued a report.
She said the group home staff also make mistakes with Ian’s medications. He is on Risperidone, Ativan, and Loxapine, which are used to treat schizophrenia. At times, he seems as if he is over-medicated. He seems “really out of it,” she said.
Accusations by JRI
Rachel said that earlier this month, a staff worker accused her and two family members of going into the group home, yelling, and breaking things. She said she was with Ian’s twin brother and his stepfather, and that at no time were they disruptive. She said she visits the home just about every day. Now, she said, when she and family members visit, they turn on their video cameras to document what is happening.
Rachel said that in a recent meeting with DDS officials, a JRI manager accused her of abusing the staff, and threatened to immediately discharge Ian because of that. She said the DDS officials, who were at the meeting, were caught off guard by this. They later told Rachel they had no record of any complaints about her. But nothing has been resolved, she said.
Lack of toileting
Despite the former service coordinator’s efforts, Rachel said the group home’s failure to attend to Ian’s toileting needs continued in the ensuing months. The incident related above about Ian’s urinal wasn’t the last time he was left without help when needing to use toileting facilities.
In a July 18 email to DDS and JRI officials, Rachel wrote that she had just visited her son and found him in clothing that was soiled with urine and feces. No staff member was available, so she cleaned her son up herself, but couldn’t find a change of clean clothing in his dresser drawers.
Rachel said that when she went looking for the staff, she found them sitting in the living room on their phones. The response she received from the staff was that “a.m. staff had not done laundry and it was washing now.”
“Although there are a few issues here,” Rachel stated in her email, “the biggest is he was sitting in soiled shorts, which he would have been for hours if I hadn’t come and cleaned him up. This is not o.k.”
The problem was not resolved, however. In an October 3 email to DDS and JRI — more than two months later — Rachel said that when she had picked Ian up at the group home the previous Saturday for a family dinner, he was inappropriately dressed in shorts and a t-shirt, and that his shorts were soiled. She and her husband got him cleaned up and “properly dressed.”
When they arrived back at the home at 7 p.m. that evening, there was only one staff member there, Rachel wrote. As with other problems regarding care in the group home, the toileting problem has persisted to the present day, Rachel told us.
Lack of showering
Rachel has also emailed DDS and JRI officials on several occasions to express her concern that Ian has not been regularly showered at the group home. In a July 5 email, she noted that she had noticed over the previous week that Ian had been going for several days at a time without a shower. In one case in which he had accidentally soiled himself, he was not showered afterward, she said.
Rachel added that when she messaged the JRI program manager to request that he ask the staff to shower Ian, she received a reply from the program manager that he was “‘looking for someone to shower him, but no one was around.’”
“This should not be something that goes days on end without happening, nor should it be something I need to ask for,” Rachel stated in the July 5 email. “Personal hygiene is necessary and also imperative in keeping skin clean, healthy and preventing breakdown.”
But the showering problem was not resolved. In the same October 3 email in which she had described the continuing toileting problem, she described a continuing lack of showering.
“Ian, having been soiled and not showered in the previous two days, needed a shower,” Rachel stated in the October 3 email. She said she was going suggest that Ian be given a shower upon arriving back at the goup home after the family dinner that previous Saturday evening. But she said she didn’t suggest it because there was still only one staff member there. She said she spent 45 minutes getting Ian ready for bed because the single staff member was busy with the other residents.
Yet, as of the following Monday morning, October 3, Ian still hadn’t been showered, Rachel said in the email. “Not only is this a violation on the requirements for the house, but Ian needed care and God forbid there were a real emergency!” she wrote.
Ian singing with two musician friends, Chris Fitz and Steve Dineen, at a local venue in Ashland. Rachel first introduced Ian to the duo about seven years ago.
Left in pain
An additional problem that apparently took months for the staff to address was back pain that Ian had regularly suffered from. Emails from last June through September indicate that this problem was not resolved in that period.
In a June 27 email to JRI and DDS officials, Rachel said Ian had been complaining about his back, and thought it might be due to his mattress. She noted, though that the mattress was “a very good Tempur-Pedic mattress and almost identical to the one he has at home.”
Two months later, on August 27, Rachel wrote that Ian’s back pain was continuing. She noted that while his doctor had prescribed Advil, an anti-inflammatory, for the pain, the staff was giving him only small amounts of Tylenol, which wasn’t helping.
She said that when she had tried to reposition Ian in his bed a few days before, he had screamed in pain and said his back was spasming. She immediately asked the staff for Advil for him, but was told none was available.
Yet, when Ian’s stepfather brought Advil to the house the following day, he was told the staff did have Advil.
“At this point, I think he needs to see a doctor, PT and perhaps have a muscle relaxer for when things get as bad as they have,” she wrote.
Three days later, on August 30, Rachel emailed JRI and DDS to say she had spoken with the group home staff the previous evening to ask that Ian be given Advil before bed. This time, she said, she was told there was no order from the JRI administrative office to do so. So, Rachel said she called the office on-call number three times and left messages with no response.
Finally, at 9:30 that night, having not been able to reach anyone in charge, Rachel drove to the Ashland home, and gave Ian Advil. She said he was “grateful” for it.
The following day, Rachel did receive a response to her email from the house manager who apologized that no one had called her back the previous night, adding, “we are working on having this fixed.” The house manager then claimed, however, that Ian “has not been expressing the back pain to the staff at the house the same frequency as he has been expressing it to you.”
But Ian’s pain was persisting. On September 12, Rachel wrote to JRI and DDS officials to say that Ian had been up all night the previous Monday night with back pain, but was sent to his day program the next day exhausted, not feeling well and was still experiencing spasms/pain.”
Rachel said that later in the year, the staff became more consistent in giving Ian Advil for his back pain. But she said she remains concerned that the staff are generally not observant enough to detect when Ian is in pain. He doesn’t always voice it, she said, referring to the house manager’s statement that the staff rely on Ian to do that.
Needs ICF or state-operated group home
It is clear from the email trail in this case that the concerns that Rachel has raised with both DDS and JRI about Ian’s care have not been sufficiently addressed or addressed in a timely manner.
We think that in cases like this, DDS should undertake investigations of the allegations and should be open to, and encourage parents in finding new placements for their loved ones.
In this case, we think Ian would be an excellent candidate for placement at the Wrentham Developmental Center or a state-operated group home. Federal law and regulations give individuals the right to be informed of “all feasible alternatives” for residential placement.
Unfortunately, as we have reported, this is not happening in the DDS system.
DDS reportedly continuing to block shared living services to client who complained of abuse by provider agency employees
Almost a year ago, Mercy Mezzanotti, a client of the Department of Developmental Services (DDS), lost her shared living services after claiming she had been emotionally abused by two employees of Venture Community Services, a DDS-funded provider agency.
Today, Mercy says, DDS is continuing to block her attempts to get her shared living services back.
On Monday (April 10), COFAR emailed DDS Commissioner Jane Ryder, contending that Mercy has been illegally denied shared living services by the DDS Worcester area office since May 2022, and urging Ryder to intervene in the matter.
Mercy is currently living in the Sutton home of Karen Faiola, who is voluntarily providing shared living services to her. Karen had been Mercy’s paid shared living caregiver for four years until Venture terminated its contract with Karen on May 23 without providing a stated reason for the termination. DDS pays corporate providers such as Venture to contract directly with shared living caregivers.
Prior to that May date, both Mercy and Karen had complained that a job coach working for Venture and a second employee had emotionally abused Mercy. As a result of the contract termination, Karen hasn’t been paid since May for continuing to care for Mercy.
Moreover, on the same day that Venture terminated its contract with Karen, a Venture employee removed Mercy against her will from Karen’s home and placed Mercy with another caregiver whom Mercy had never met. When Karen, at Mercy’s insistence, brought Mercy back to her home two days later, DDS moved to disenroll Mercy from its federally reimbursed Home and Community Based Services (HCBS) program. DDS argued that in leaving the stranger’s home, Mercy was refusing DDS services.
Door was left open to reapply
In February, a DDS-appointed hearing officer sided with the Department and upheld Mercy’s disenrollment, but left the door open for Mercy to “work with” the DDS area office to reapply for shared living services. That month, Mercy complied with the hearing officer’s decision by asking for a referral to a new provider payment agency, the Kennedy Donovan Center. Mercy’s hope was that Kennedy Donovan would then agree to her longstanding request that Karen remain as her caregiver.
The DDS area office first appeared to agree to Mercy’s request for a referral to the Kennedy Donovan Center. But then the area office failed without explanation to send the referral. Mercy and Karen said Kennedy Donovan informed them it could not process Mercy’s application for services without a referral from the DDS office.
Mercy’s service coordinator supervisor in the area office then texted Mercy last month to say she would have to undergo an eligibility “reprioritization” before she could be “considered for residential services.” The supervisor declined both to answer Mercy’s question why she was not sending the referral as she had earlier promised to do, and to explain the purpose of the reprioritization.
In our email to Commissioner Ryder on Monday, we stated that “Mercy has been treated with callous cruelty by the DDS Worcester area office, which has acted time and again, without explanation, to thwart her wishes regarding her living arrangements, care and services.”
We noted that the area office first refused to properly investigate Mercy’s allegations that she had previously been emotionally abused by Venture employees and was subsequently emotionally injured by her involuntary removal from Karen’s home.
“Bad-faith argument”
We stated to the commissioner that the area office then argued that because Karen no longer had a contract to provide shared living services to Mercy, Karen was no longer a qualified shared living caregiver.
As a result, according to the area office, Mercy was “refusing DDS services” in continuing to stay with Karen. This was, in our view, “a bad-faith argument that deliberately ignored Mercy’s express wish and desire to continue to live and receive services from Karen.”
As we stated to Ryder, Mercy has tried to comply with the hearing officer’s decision that she should nevertheless work with the DDS area office to find a new Qualified Shared Living Provider agency. Yet, as noted, the area office has continued to refuse to cooperate with Mercy in this regard.
Services needed now
Mercy needs shared living services. If Karen were to stop caring for her without compensation, we are concerned Mercy could well become homeless. Mercy needs to remain as a “First Priority” client as per DDS regulations (115 CMR 6.07).
We maintained to Ryder that Mercy is entitled under the DDS regulations to receive shared living services, and, in our view, has been improperly and illegally denied those services since May 2022. In addition, the DDS area office has acted repeatedly to thwart Mercy’s clearly stated wish and preference to have Karen remain as her shared living caregiver.
As the hearing officer in Mercy’s appeal of her disenrollment stated, Mercy “is eligible for and receives supports from DDS on the basis of her intellectual disability.” (In actuality, Mercy has not received such supports since May 2022.)
We hope that Commissioner Ryder will take action in this matter and right the longstanding wrongs that are being done to both Mercy and Karen.
DDS data imply the state-operated group home system may have vacancies
While Governor Maura Healey has proposed a welcome 11% increase in funding for the Department of Developmental Service’s state-operated group homes in the coming fiscal year, documents we have received from DDS indicate that those residential services remain underutilized.
In January, we asked DDS for its latest data on the census or number of residents in the state-operated group homes and intermediate care facilities (ICFs) in Massachusetts, and for records indicating the reasons why several state-opereated group homes were closed in 2021.
DDS’s latest data and data previously provided to us imply that there have been, and may still be, vacancies in the state-operated group home system despite the apparently permanent closure of a net of six homes in 2021. That raises a question for us as to why the Department does not appear to offer state-operated group homes as an option to persons seeking residential placements in the DDS system.
As we have reported, DDS does not inform people waiting for residential placements of the existence of the state-operated system. In fact, people often tell us that DDS tells them there are no vacancies when they do inquire about state-operated group homes as potential placements for their loved ones.
Records we received last month in response to our January request also indicate that the closures of the state-operated group homes in 2021 were due to existing and projected staffing shortages that were expected to be temporary.
While the documents do not indicate that the closures were part of a strategy to dismantle the state-operated group home system, the records raise a question why only one of the seven homes that were closed that year has subsequently been reopened.
No continuing data on census
In an initial response on January 18 to our Public Records request, DDS said it no longer had data on the census or total number of residents in the state-operated group home system. The Department said it could provide data only on the total capacity of the group homes.
It remains unclear why DDS stopped collecting the census data. Data, which DDS provided to us in 2021, showed a steadily dropping census in the state-operated group homes and ICFs in the state for several years previously.
The declines in the census in those settings implied a departmental strategy of letting the critically important state-operated system die by attrition. Successive administrations have instead funded the continued expansion of a much larger system of group homes in Massachusetts that are run by corporate providers that contract with DDS.
Data indicate possible vacancies in state-operated group homes
The January DDS data showed that the total capacity in the state-operated homes dropped from 1,173 residents in Fiscal 2019 to 1,157 in Fiscal 2021 — a 1.4% drop. That would indicate that some homes were closed prior to 2021. The data, as we’ve reported, also showed a continuing drop in the census at the Wrentham and Hogan developmental centers or ICFs.
As noted, DDS previously provided us with data in 2021 on the census in the state-operated group homes. That previous data shows the census dropped from 1,151 in 2019 to 1,097 in 2021 — a 4.7% drop.
Given that the census in the state-operated group homes dropped by a greater percentage than the capacity of the homes from 2019 to 2021, it appears there were vacancies in the remaining state-operated homes between 2019 and 2021.
In fact, the differences between the census numbers and capacity numbers in those years imply that there were 22 vacancies in the state-operated group home system as of 2019, and 60 vacancies as of 2021. Unfortunately, we won’t be able to do that analysis going forward from 2022 because DDS is no longer keeping records on the census in the group homes.
DDS finally appeared to use its knowledge rather than doing a computer search for the latest documents
In response to our January Public Records Request, DDS had initially conducted computer searches for emails, and was proposing to charge us as much as $22,000 to process them. In two appeals to the state Public Records Division, we suggested DDS should use its knowledge to find the records rather than doing computer searches. It appears DDS finally used that knowledge.
The three documents that DDS provided us last month were letters from two DDS regional directors that concern state-operated group home closures in two DDS regions (Central West and Southeast) during an agreed-upon timeframe of August to November of 2021.
The three letters were from Rick O’Meara, DDS southeast regional director, and Anthony Keane, central west regional director, apparently to families or guardians of group home residents. Two of the letters indicate that the closures were either planned or had occurred due to both insufficient staffing and the expected impact of a new administration policy requiring state employees to be vaccinated for COVID-19. One of the letters, from Keane, referred to an unspecified emergency.
The letters from Keane and O’Meara stated that the closings would be temporary, and that residents would return to reopened homes when the staffing was once again adequate.
DDS should be fully using its state-run group homes
Despite the closures of the state-operated group homes in 2021, the possibility that vacancies exist in the remaining residences is a cause for concern.
Every day, we hear from people who are either not satisified with the care or services their loved ones are receiving in the provider-run residential system, or who can’t get residential services. When they do ask about the availability of state-run group homes or ICFs, they get push-back from the Department.
We hope that the additional funding that Governor Healey has proposed for the state-operated group home system will be used to hire sufficient staff to run the remaining homes in the system at full capacity. DDS should be fully utilizing every available resource to provide adequate care and services to all who want them.
Boston Globe seeking information about restraints, staffing, and community integration in group homes
The Boston Globe is seeking information from families of children and adults who are diagnosed with autism and who are living in group homes. That includes group homes that are associated with special education schools for persons under the age of 22.
Below is the message two reporters from The Globe asked us to convey to our readers:
We are reporters for The Boston Globe, and we are researching group homes that specialize in children and adults diagnosed with autism, including group homes that are part of residential schools. We would like to speak with families about their experiences with these types of group homes, including issues around restraints, staffing, and community integration.
We have extensive experience covering health care, social services and family issues in Massachusetts, and are eager to hear from you. You can reach Liz Kowalczyk at Lizbeth.kowalczyk@globe.com or 617-291-4318, and Stephanie Ebbert at Stephanie.ebbert@globe.com or 617-504-6381. We understand these can be sensitive issues, so if families want to reach out initially without using their names, that is fine too. Many thanks for your help.
We are always ready to offer our help to mainstream media outlets that investigate abuse and neglect of persons with developmental disabilities. We encourage you to contact Liz Kowalczyk or Stephanie Ebbert if you think your loved ones meet the criteria they are describing.
We have explained to the Globe that since the COVID pandemic began, we have seen a three-part crisis accelerating in the Department of Developmental Services group home system:
1. Continuing staffing shortages are resulting in both worsening care and conditions in group homes and a reduction in meaningful activities in community-based day programs.
2. Due to an ideology that promotes privatization, successive administrations in Massachusetts have been phasing out state-run Intermediate Care Facilities (ICFs) and state-operated group homes and have been expanding the state’s corporate provider-run group home network. This has stranded potentially thousands of people who are unable to function in community-based settings or who are unable to access state-run programs.
Meanwhile, the expansion of the provider-run system has been correlated with ever-rising financial compensation of provider executives and continuing low pay of direct-care workers.
3. Family members and guardians who complain about the problems noted above often find themselves marginalized by DDS. They are sometimes banned from contact with their loved ones; and, in some instances, the Department has challenged their guardianships.
If the Globe is able to help us shine a light on any of these issues, it will help lead to better lives for some of the most vulnerable members of our society.
DDS says Waltham group home provider must check all homes for insect infestations and plan for possible relocations of residents
As a Waltham group home reopened last week after a month-long shutdown due to a cockroach infestation, the Department of Developmental Services (DDS) ordered WCI, Inc., the corporate provider that manages the residence, to assess all of its group homes for “any hazards.”
In a Resolution Letter, dated March 6, DDS Area Director Joan Thompson also stated that the cockroach problem, which resulted in the February 8 shutdown of the Waltham residence, had actually been a “preexisting issue” there.
Thompson said the residence had been “treated a number of times in recent months.” However, it was only in the latest shutdown, which occurred on February 8, that the residents were relocated.
According to the Resolution Letter, the residents had not been relocated during the previous infestation treatments, which presumably involved the application of pesticides in the home. The letter directed WCI to develop “protocols to relocate residents” if “chemical treatments of any kind are needed.”
In the latest instance, the five group home residents were evalucated to a Marriott Hotel in Woburn where they stayed until their return to the Waltham group home last Tuesday (March 7).
Christine Davidson, whose son John is one of the group home residents, said today that she had not been informed of the previous insect exterminations at the home. She said, in fact, that she happened to walk into the home one afternoon a few months ago, unaware that a pesticide treatment had just been done in the residence.
The home was empty at the time, she said, because the four of the residents were at day or work programs and her son had been taken out for lunch.
DDS claims it wasn’t notified of the insect problem
The Resolution Letter also stated that families, guardians, and DDS had not previously been notified of of the ongoing insect problem in the home. However, Christine said that both she and her son had repeatedly complained to WCI over the past year about the roaches and about other unhygienic conditions in the residence.
“John had complained about bugs being in his (breathing machine) mask. Nobody listened to him,” Christine said. She sent us a photo last month of at least two roaches in John’s breathing machine. She had taken the photo while her son was home with her for a visit on the first weekend after the evacuation of his group home.
Christine previously sent us photos of potentially unhygienic conditions in the home in February 2022.
The March 6 Resolution Letter stated that the latest infestation was brought to the attention of WCI when a DDS staff person in the home observed the insects. “Of additional concern is that at the time of the DDS visit, one staff person stated that they were going upstairs to eat to be away from the roaches,” the Resolution Letter added.
DDS does not address allegedly unhygienic conditions
The DDS Resolution Letter was the apparent conclusion of an investigation done by the Department in response to a complaint filed by Christine following the February 8 shutdown of the group home.
In her complaint, Christine stated that the home staff were “not providing proper living conditions,” and that the home was “infested with rodents and roaches,” according to a February 17 DDS letter stating that the complaint would be investigated.
The March 6 DDS Resolution letter, however, did not specifically address Christine’s allegations of unhygienic conditions in the residence, or order the home to be kept in a cleaner state. The letter stated only that WCI must provide “a detailed plan of scheduled visits …to all homes by maintenance and qualified management staff to assess living environments for any hazards.”
Christine said she didn’t think that latter statement was necessarily a requirement that WCI keep the home cleaner. She said, in fact, that a WCI executive told her that the provider will start sending a cleaning crew to the home twice a month. But she said this was at her suggestion and was not the result of a directive from DDS.
Christine said, however, that WCI did not respond to her request that her son be provided with a new bed and bedding following the latest infestation. She said she toured the home on March 7, the day it reopend, and that “everything still looked grimy. I had expected to see the home enhanced. They got rid of the bugs, but the place still looks dirty. Everything is still topsy turvy.”
She said WCI did send an pest control inspector to her own house to make sure the infestation did not spread to it after her son came home from the hotel on weekends to visit her. She said the inspector determined that her home does not have roaches.
We’re glad to hear the bugs are gone from the Waltham residence, at least for the time being. But we are also concerned about the lack of communication from DDS on this matter. As I’ve mentioned before, DDS Commissioner never responded to an email query I sent her about the group home shutdown in mid-February.
In her March 6 Resolution Letter, Thompson appeared to blame at least some of the lack of communication on WCI.
But Christine said she still has not received answers from DDS itself to her ongoing concerns about the house. She said that despite an initial promise from the Deparment to “work collaboratively” with her in the wake of the latest infestation, DDS officials from Thompson’s office have not returned her phone calls.
UPDATE: Mother’s house may now be infested with insects from group home ordered shut down last month
As Christine Davidson and her son John wait for word as to when John’s Waltham group home will reopen after an infestation of cockroaches and possibly rodents almost a month ago, Christine said her own house may now be infested with the insects.
The group home, which is run by WCI, Inc., a corporate provider to the Department of Developmental Services (DDS), was ordered temporarily shut down by the state on February 8 due to the infestation. Since then, John and four other residents of the group home have been staying in a Mariott Hotel in Woburn.
Christine said that while she still hasn’t been told when the group home will reopen, an executive with WCI invited her to meet him at the residence on Tuesday morning (March 7) to inspect it. She said she was told DDS is scheduled to inspect the home today (March 6).
Christine said that when John first came home for a weekend visit with her last month after having been evacuated from the group home, she saw cockroaches crawl out of his wheelchair. She also found the insects in his CPAP breathing machine, which the group home staff had sent to Christine’s home that weekend. Last week, she said, a roach crawled out from underneath the refrigerator in her kitchen.
“It’s disgusting,” said Christine, who said she has done everything she can to keep her home clean. “This whole thing has been an unending nightmare.”
A letter sent by DDS to Christine on February 17 states that a complaint about the group home infestation was reported to DDS that day, more than a week after the incident. The DDS letter stated that, “the home is infested with rodents and roaches,” and added that DDS would investigate the complaint.
Christine said she doesn’t want her son going back to the residence until WCI provides him with a new mattress in his room, new bedding, and new curtains for his window. But she said the WCI excecutive has so far declined that request. “He (the executive) said if they were to do that for John, they would have to do it for everyone,” Christine said. “I said ‘of course, you should do it for everyone.'”
In an email sent on February 15 to Christine, Jessica Belcher, assistant DDS area director, termed the insect infestation “completely unacceptable,” and said the Department was “holding (WCI) accountable to fix the problem and create a plan so that something like this does not happen again.”
Belcher, whose email didn’t mention the possibility of a rodent infestation as well, also said that DDS would work “collaboratively” with both Christine and her nephew George Papastrat, who are John’s co-guardians, “so that the disruption causes the least amount of stress possible for John.”
Christine said this past weekend, however, that she has lately had trouble reaching Belcher. “I called three times this past week and haven received a call back,” she said.
Christine said that shortly after the group home was shut down, Belcher was responsive to her, and even suggested that John might be able to move to another WCI group home in Waltham. Christine said she was willing to entertain that idea, but was told more recently by WCI that the second residence couldn’t accommodate John, who needs a wheelchair, because the only available bedroom in it is on the second floor.
Christine said she asked Belcher whether a state-operated group home is available in the area for John, but said she has not received an answer to that question.
Christine said she was glad to hear that DDS intends to hold WCI accountable in the matter, but doesn’t understand why nothing was done about her complaints over the past year about unhygienic conditions in the group home. In February 2022, Christine sent us photos of potentially unsanitary conditions inside the group home.
Christine also said the WCI executive told her the provider is offering to exterminate the cockroaches in her own home, but that he did not say when or how that would be done.
Despite the fact that John has now been living in the hotel for close to a month, Christine said she was told by the group home manager that she is not allowed to visit him there. She said the manager did not give her a reason for the prohibition on visits. Such a prohibition would appear to be in violation of DDS regulations stating that family members must be permitted to visit departmental clients at all times.
Christine said a new breathing machine has been delivered to John’s hotel room. But she said John told her he doesn’t want to use it because he is afraid there may be insects in it.
On February 14, I emailed DDS Commissioner Jane Ryder and other top DDS officials to ask for a comment on the incident and whether they considered it to be an isolated case. To date, I have not received a response to that query.
DDS turns COFAR’s public records request over to a computer, resulting in an initial processing fee estimate of over $22k
The Department of Developmental Services (DDS) has begun using computers and algorithms to locate and process records in response to our public records requests, and that doesn’t appear to have been a good thing for transparency.
In the latest case, I had asked DDS in January for records listing reasons for the closures of seven state-operated group homes during a two-year period from 2021 through this year.
You would think it would not be difficult for DDS to locate and provide a reasonably reviewable number of documents listing those reasons.
But in a response to my records request, a DDS attorney said the Department had “requested information technology (‘IT’) staff” to search for internal emails, and that the computer search had identified 33,541 such emails and attachments “that may be responsive.”
The DDS records attorney then noted that the Public Records Law allows agencies to charge $25 per hour for staff time in compiling and redacting documents in order to comply with privacy and other laws such as HIPAA.
The attorney stated that because it would take an estimated 837 hours to process the 33,500 emails, the fee for providing them to us would be $22,925. And that fee could go higher if the hourly estimate turned out to be low.
DDS supposed to use its “knowledge of the records”
Arguing that DDS could have located a small number of responsive records, I appealed the DDS response on January 23 to Manza Arthur, the state’s public records supervisor, who heads a division in the office of Secretary of the Commonwealth Bill Galvin. The Public Records Division was established to ensure that state agencies comply with the Public Records Law.
Arthur issued an initial “determination” on February 3 that DDS needed to explain more fully how it had calculated its fee. In addition, the supervisor stated that DDS must “must use its knowledge of the records to facilitate providing any responsive records.”
Arthur didn’t elaborate on what is involved in using knowledge in providing records. But to us, it seems to mean that DDS presumably has personnel who have knowledge of the issues involved, and that those individuals should be able to use that knowledge to find and produce a small number of responsive records.
In that case, there wouldn’t be a need to redact and process thousands of documents that may or may not be responsive to our records request.
A Guide to the Massachusetts Public Records Law published by CommonWealth magazine states, in fact, that a state agency’s “records custodian is required to use his or her ‘superior knowledge’ to determine the exact records that are responsive to (a public records) request.”
The use of such knowledge appears to be what was missing from the Department’s response to my records request. DDS appeared to have simply conducted a computer search for the records using search terms. Anyone can feed search terms into a computer. Institutional knowledge is much different.
DDS says it lacks “capacity,” apparently for a records search based on knowledge
In a phone conversation with the DDS records attorney on February 8, I suggested that instead of conducting a computer search for the records I was seeking, DDS should query departmental personnel with that knowledge of the issue and the records. I also offered to narrow my original request for documents to a period of four months between August and November 2021.
But in a February 17 written response to me, the DDS attorney stated that DDS “does not have the capacity to conduct searches for the documents responsive to your request.” Therefore, he said, DDS had once again requested It staff to conduct a computer search.
This time, the number of “potentially responsive documents” was narrowed to 2,399 emails. The attorney said that using an “algorithm for computing costs…,” DDS had calculated a new fee for producing records of $1,499.38.
While this estimated fee was down from DDS’s original fee estimate of $20,925, the revised estimate is still unacceptable to us. The DDS attorney didn’t elaborate on what he meant by lacking “capacity.” But the end result was the same as the first time. The Department was continuing to feed search terms into a computer.
A test for the state’s Public Records Division
As a result, on February 21, I once again appealed to the supervisor of records.
In my second appeal, I stated that using computers and algorithms to respond to public records requests — which DDS has now done on several occasions — invariably results in a large number of “potentially responsive” documents, which may or may not be truly responsive. Such computer searches also result in inordinately large processing fees for producing the records.
As noted, my narrowed records request concerned seven DDS-run group homes that were closed during the period from August through November 2021.
Does DDS lack such superior knowledge of records concerning those seven homes? Are there no employees within the Department who have an understanding of the reason or reasons that the homes, which the Department managed, were closed in that short period of time?
Is that what the Department means by lacking capacity? If there are no such knowledgeable employees in DDS, the Department should state that to be the case.
In my latest appeal, I asked the public records supervisor to order DDS to more fully explain what it means in saying the Department lacks the capacity to conduct anything other than a computer search for responsive records, and specifically why the Department cannot use its superior knowledge in searching for the requested records.
In our view, this is a potentially important test for the state’s Public Records Division.
Will the public records supervisor require DDS to query its employees about these records, which is something DDS apprently doesn’t want to do? Or will the supervisor find that doing a computer search is sufficient to constitute a use of institutional knowledge?
In that latter case, it would seem that DDS and other agencies would have the green light to turn every public records request entirely over to computer searches.
It’s certainly possible that the supervisor will come up with a different solution to the problem. We expect a determination from the supervisor next week.
COFAR blog 