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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.
COFAR blog 