COFAR blog

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.