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State legislators could help change the culture in DDS. Will they?
More than a month ago, we brought a case involving the apparent neglect of a resident of a provider-run group home and the intimidation of his family to the attention of the co-chairs of the Legislature’s Children, Families, and Persons with Disabilities Committee.
Then on March 5, I forwarded a follow-up post about the case to the committee co-chairs, Senator Robyn Kennedy and Representative Jay Livingstone.
We think the case illustrates a disturbing and ongoing state of dysfunction in the state’s system of care of persons with intellectual and developmental disabilities (I/DD). It seems that the Department of Developmental Services (DDS) is doing little or nothing to change a culture in the system that appears to foster this level of neglect and intimidation.
As our posts reported, Rachel Surner informed the upper management of her son’s corporate provider-run group home in June 2022 of an incident in which the staff neglected to give her son Ian his portable urinal. Ian, 31, has spastic quadriplegia, a condition that has left him with the limited ability to move only his arms.
Having received distress texts on her phone from her son, Rachel had to go to the home herself at 6:45 in the morning to retrieve his urinal from the floor next to his bed.
Then in January of this year, the same thing happened again when the same staff member again allegedly neglected to give Ian his urinal. The response of the provider, the Justice Resource Institute (JRI), however, was to blame Rachel for allegedly being “disruptive” in the home, and to impose severe restrictions on her visits to her son.
DDS stated that Rachel and her husband would either have to comply with those restrictions or remove Ian from the home.
Rachel had complained about numerous other problems in the home as well, including a failure to regularly shower or toilet Ian, and a failure to involve him in community activities.
On February 12, I talked to a member of Senator Kennedy’s staff at a meeting she held with constituents in my hometown of Berlin, MA, and gave her information about Ian’s case and that of another mother whose son was also severely neglected in a provider-run group home.
In that second case, the son had suffered extreme dental decay, weight loss, removal of prescribed medications, and unexplained injuries. The aide said she would bring the cases to Senator Kennedy’s attention.
Not having heard anything more by the beginning of this month, I stated in my March 5 follow-up message to both Kennedy and Livingstone and their staffs that we would be happy to arrange for our members to provide them with further information about the ongoing problem of abuse and intimidation in the DDS system.
Even The Boston Globe has written about this culture, noting earlier this year that when parents of children with autism have complained about abuse and neglect in DDS-funded group homes, they have been labeled as “too demanding.” And a number of parents who spoke to the newspaper requested anonymity because “they were afraid that state officials or providers would retaliate against them.”
Obligation to change the DDS culture and system
We think legislators have an obligation to help change a culture within DDS that appears to perpetuate poor care and intimidation of families in the provider-run group home system. As co-chairs of the Children and Families Committee, Kennedy and Livingstone are in a position to exert pressure on DDS to change that culture.
Last fall, we first met with both Senator Kennedy and Representative Livingstone on Zoom to make a case for the preservation of state-run residential services. In our view, state-run services are more accountable to both families and taxpayers than are corporate provider-run services.
Levels of abuse and neglect in the Wrentham and Hogan facilities are significantly lower than in the provider-run group home system, based on a review of state data that we undertook.
On a per-client basis, state-operated group homes were well below average in terms of both substantiated allegations of abuse and criminal referrals between Fiscal 2010 and 2019. Also, we found that the state-run Wrentham and Hogan Intermediate Care facilities were at or near the bottom of the list of total providers in those measures.
Yet, the Wrentham and Hogan Centers and the state-run group homes are ultimately facing closure because a succession of administrations has largely closed their doors to new admissions.
Last fall, Senator Kennedy said she would help us arrange a meeting with Governor Healey in which we would raise these concerns. We urge people to email Kennedy’s and Livingstone’s offices, and forward a link to this blog post.
You can email them at Robyn.Kennedy@masenate.gov and Jay.Livingstone@mahouse.gov.
Remind them that it is time to change the culture in DDS and to take concrete steps, including setting up a meeting with the governor, to preserve state-run services in the DDS system.
Thanks!
Mother says neglect and intimidation continued at her son’s group home
More than a year and a half ago, Rachel Surner informed the upper management of her son’s group home in Ashland of a disturbing incident in which the staff neglected to give her son, Ian Murawski, his portable urinal.
Rachel had to come to the house herself at 6:45 in the morning in June 2022 to retrieve the urinal, which was on the floor next to Ian’s bed. She said she was met at the door with resistance and intimidation by a staff member on duty.
Ian, 31, has spastic quadriplegia, a condition that has left him with the limited ability to move only his arms. Despite that, Ian, who has an intellectual disability, is an engaging young man with a major musical singing talent.
Rachel also informed the Department of Developmental Services (DDS) about the June 2022 incident, and a range of other problems in the group home, which is run by the Justice Resource Institute (JRI), a corporate DDS provider. But nothing was ever done to improve the situation, she said.
Ian Murawski and his mother, Rachel Surner
Following an almost identical incident in January of this year in which the same staff member again neglected to give Ian his urinal, Rachel said JRI’s response was to blame her for allegedly being “disruptive” in the home.
JRI then imposed severe restrictions on her visits to her son, and DDS stated that she and her husband would either have to comply with those restrictions or remove Ian from the home.
Rachel and her family chose the latter course. They took Ian home last month to live with them.
They are seeking another placement, and are interested in the Wrentham Developmental Center or possibly a state-operated group home. But, Rachel said, DDS has provided few answers to their questions about those options.
As we argue below, we believe that in issuing the visitation restrictions, JRI violated DDS regulations ensuring a right to visitation. Also, we think DDS violated its transfer regulations that prevent the termination of residential services to individuals without due notice and due process.
This is one of many cases in which providers and DDS appear to have placed the blame on family members for being disruptive or overly demanding when they have attempted to advocate for their loved ones in group home settings. (See here, here, and here.) In all of these cases, DDS has appeared to side with provider staff against the families when those families are simply complaining about substandard care.
‘Passive-aggressive torture”
Rachel and her husband, who deny having ever caused a disturbance in the home, said the latest incident in January occurred after her son had called her repeatedly, screaming and “in crisis.”
Ian, who is high-functioning despite his disability, takes medication for extreme anxiety and depression, which can reach levels high enough to cause psychosis, Rachel said. However, the staff didn’t give the medication to Ian regularly because they didn’t pay enough attention to him to recognize his symptoms of anxiety, she said.
According to a DDS complaint intake letter about the January 21 incident, Rachel went to the house from her home in Holliston at 11:30 p.m. after being unable to reach the staff by phone. A JRI attendant on call, whom she also had contacted, had told her that Ian was asleep. Rachel said she knew this wasn’t the case as Ian was still calling and texting her in distress.
When she entered the house, she found that Ian was awake in his bed, which had been left in an upright position. He had no remote controls for adjusting the bed, no urinal, no water, and the overhead light had been left on. Without access to the remote controls, there was no way Ian could adjust his bed or get to sleep.
According to the intake letter, a staff member, meanwhile, was lying under covers with a pillow on a couch in the living room, and was speaking on a phone in a foreign language. When Rachel asked repeatedly where the remote controls were, the staff member refused to answer and said he was on a call. At that time, Rachel pulled her phone out of her back pocket to call her daughter, and the staff person then lunged at her to grab it from her, the intake letter stated.
This was the same staff member, according to Rachel, who had neglected in the previous incident in June 2022 to give Ian his urinal. The January 2024 intake letter quoted Rachel as referring to the failure to give Ian his remote controls and urinal as “a passive-aggressive form of torture.”
The latest incident is under investigation by the Disabled Persons Protection Commission (DPPC).
June 2022 incident
As we reported last April, Ian repeatedly texted Rachel early one morning in June 2022 from the group home that he needed to urinate, but couldn’t locate his portable urinal.
Rachel said she tried to call the house, but the phone was off the hook; so at 6:45 a.m. on a Sunday morning, she drove there. As she waited for someone to answer the door, she could hear Ian crying for help.
Rachel said the same staff member, who later neglected to provide Ian with his urinal and remote controls in January of this year, came to the front door, but refused at first to let her in. She went past him into the house, and went to her son’s room where she saw that his urinal, which was supposed to be on his bedside table, was on the floor.
Rachel said that when she then tried to leave the room to give Ian privacy, the staff member initially blocked the door to the bedroom and wouldn’t move to let her out. He later moved away slightly, but she felt threatened and intimidated by his actions.
She said she later asked the staff member why he didn’t respond to Ian’s plea for help, to which he replied that Ian “’never told us he needed help.’” She said she replied to the staff member that she could hear Ian’s cries for help while she was standing at front door.
Problems not corrected
Rachel said neither JRI nor DDS made efforts to correct problems in the group home, such as the urinal incidents, that she brought to their attention. One other example of that was her discovery in July of 2023, after bringing Ian home from a musical gig at a restaurant in Ashland, that overnight staff in the home appeared to be asleep in the living room when they arrived. As noted above, she said that issue continued through this past January.
Other ongoing problems have included:
Hygiene neglect
Rachel said Ian went for days with no shower or toileting in the group home. He also went for days without having his teeth brushed. His bed linens filthy, she said, and he was often dressed in same clothing as the day before. His finger and toenails were often unclipped, and he was often not shaved.
Lack of socialization, activities, and community involvement
Rachel contends the staff rarely took Ian out of the house on community outings. She said this was due to the staff’s lack of involvement in general with him. She noted that Ian needed far more care than the other clients in the home who are all able-bodied.
Visitation restrictions violated DDS regulations
Rachel said that after the incident on January 21 of this year, JRI’s response was to issue visitation restrictions against her, which both she and a JRI program director were supposed to sign.
A copy of the unsigned and undated visitation restrictions contains the introductory statement that, “Inappropriate and disruptive behavior creating an environment detrimental to program services have occurred during visits of Rachel Surner to (the group home).”
Rachel maintains that statement is completely untrue. She maintains that neither she nor any other members of her family were ever disruptive in the home.
Rachel was then supposed to agree to the following restrictions:
- Visits may occur no more than once per day for a maximum of one hour per visit.
- No video recording of staff or other individuals may take place during the visit. (Rachel maintains she never recorded staff, but live videotaped her visits so family members could be witnesses to interactions in the home.)
- Drop-offs without entering the home or property must also be scheduled in advance with JRI management and are limited to 10 minutes.
- Parking on the street outside the property is prohibited except during agreed-upon visits.
- JRI may deny plans for any visit if it is not deemed necessary or it is detrimental to the program.
- JRI staff have the right to terminate a visit at any time. I (Rachel) agree to leave peacefully when requested or required to do so.
Rachel said the DDS assistant area director stated to her that she would have to agree to the restrictions in order for Ian to continue to live in the group home.
In our view, JRI, in issuing the visitation restrictions, was acting in violation of DDS regulations, which permit visitation by a guardian “to the maximum extent possible.” According to the regulations, “Reasonable restrictions” may be placed on the visits “to avoid serious disruptions in the normal functioning of the provider.”
Given that Rachel denies that her family ever caused any disruptions, we think DDS should have given the Surners a chance to rebut the allegation. That didn’t happen.
We also think DDS violated the Department’s transfer regulations, which prohibit the Department from terminating a residential placement without giving 45 days’ notice, specifying an alternative location and obtaining the guardian’s consent to it.
Desire for a new placement
Rachel said that since Ian’s discharge from the group home, he is not currently receiving any services from the Department. She said that while DDS did provide her with a list of other group homes, the Department has not answered many of her questions about the list.
This case is one of many demonstrating that the DDS-funded provider-run residential system has become dysfunctional. Problems identified by family members are not corrected, but the family members themselves often become the focus of blame.
DDS has consistently also blamed these problems on staffing shortages. But that doesn’t explain why the Department apparently didn’t act in this case to ensure that overnight staff were not sleeping on the job, or that the staff treated Ian with dignity and respect. Repeated failures to provide a portable urinal to a person with quadriplegia is inexcusable, and is rightly being investigated as abuse by DPPC.
Inadequate staffing also doesn’t explain why the Department would agree to an excessively restrictive visitation policy against the family, or why the Department didn’t seek Rachel’s response to the charge that she was being disruptive in the home.
DDS needs to reexamine and change its culture. In our view, this is a key test for the Healey administration.
Globe update report has devastating findings about DDS provider-run group home system. Is the administration listening?
In the second of two reports on the corporate, provider-based group home system in Massachusetts, The Boston Globe last week characterized the system as “hobbled by poor staffing and struggling with allegations of abuse and neglect.”
Last week’s article was a follow-up to a report in September by the Globe’s Spotlight Team, which had focused on widespread abuse and neglect in provider-run residential schools for children and teens with autism.
We think the Globe’s reporting raises some important questions, one of which is whether the Healey administration and the Legislature are listening.
The Globe’s reporting echoes assertions about abuse and neglect in the system that we have been making for years. Moreover, we think the Globe is on the right track in noting a key factor plaguing the system, which we have long emphasized, of underpaid and undertrained staff.
Last week’s Globe article stated that most of the parents of autistic children whom the paper had interviewed asserted that, “Massachusetts has never solved long-term systemic problems of low pay and inadequate training” in the system.
The paper noted that although “the state has directed millions of dollars to group home providers to help them recruit and keep staff, pay remains similar to that of some retail and fast food workers; $17 to $20 an hour is typical.”
The Globe further stated that “a number of parents who spoke with (the newspaper) requested anonymity because they were afraid that (as we have long reported) state officials or providers would retaliate against them or their child if they spoke out.”
Paper needs to examine the causes
We hope the Globe will investigate the causes of that culture of retaliation and intimidation of families who complain about inadequate care and even abuse and neglect of their loved ones; and that it will investigate the causes of the underpayment of staff.
Understanding the causes of the underpayment of staff might help explain where the millions of taxpayer dollars went, given the money, as the Globe implied, doesn’t appear to have been used to raise staff wages to any significant degree. It might also explain why direct-care workers in the provider system have historically been underpaid and undertrained.
We think an investigation of the causes will reveal that the corporate provider system has always been been about making as much money as possible for its executives while paying its direct care workers as little as possible. That appears to explain why the privatization of human services has never met the promise of both delivering high-quality care and saving money. It may also explain why continual efforts to raise the pay of direct care workers don’t seem to lead to that result (see Massachusetts Inspector General’s 2021 Annual Report, page 27).
State-run services ignored as potential solution
Last week’s Globe article referred to concerns raised by the Arc of Massachusetts and the Massachusetts Association of Developmental Disabilities Providers (ADDP) — both of which actually lobby for the providers — about the shortage of staff and a lack of available group homes.
But while organizations like the Arc and the ADDP publicly decry the poor care and abuse of clients and the underpayment and shortage of staff, they both oppose a key potential solution to the problem, which would be to open the doors of the Wrentham and Hogan Developmental Centers and provide state-operated group homes as options to individuals seeking residential placements.
The state-run Wrentham and Hogan Centers and state-operated group homes have better trained and better paid staff than the provider-run homes. Yet the state-run facilities are losing population even as the number of people waiting for placements is growing. That is because the administration is not offering state-run facilities as options to people seeking placements, and is even denying requests made by families to place their loved ones in them.
The Arc and the ADDP appear to offer no solutions to those problems other than to ask the state to direct more money to them. In our view, those problems will never be solved unless the state changes the incentives driving privatized care.
Real oversight needed
In addition to providing families with state-run facilities as options for residential care, the state needs to take steps to ensure that group home providers really do raise the pay of their direct-care workers. It could begin to do that by establishing true financial oversight of the provider system. Currently, that oversight is practically non-existent.
Successive administrations and the Legislature have been committed to the privatization of DDS care for decades. They have maintained an extraordinarily close relationship with the corporate provider system in that respect. As noted, the Globe pointed out that both DDS and the providers often retaliate against parents and family members who dare to complain about poor care in the group homes.
We hope the Healey administration will not allow the anti-family culture and the continuing underpayment of direct-care staff in the DDS provider system to continue. We also hope the administration will consider reversing the longstanding administration policy of allowing state-run residential facilities to die by attrition.
The breakdown of the DDS system caused by decades of runaway privatization and mismanagement is finally being reported by the Globe. We hope the Healey administration is listening.
Latest Supported Decision Making bill offers no improvements over previous versions
We first pointed out problems seven years ago with a bill in the state Legislature that would authorize Supported Decision Making (SDM) in Massachusetts.
SDM involves written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors.
Each year, SDM legislation has gotten closer and closer to final passage in the Legislature; and yet, as far as we can see, the proponents of the bill have not made what we argue are needed changes or improvements to the versions of the bill that they have continued to file.
This year’s version of the bill, S. 109, is no exception. In our view, it has the same problems as the previous versions.
Last year’s version of the bill (S. 3132) passed the Senate in November and died in the House Ways and Means Committee, just one step away from final passage in the full House. At the time, we had urged the Ways and Means Committee not to send the bill to the House for final passage.
As we noted in a previous post about that bill, it lacked provisions to protect the rights of persons with intellectual and developmental disabilities, and their families and guardians.
S.109, this year’s version, is now before the Children, Families, and Persons with Disabilities Committee. We are similarly asking the Committee this year not to advance the bill in the legislative process without making needed changes to it.
Under the bill, an SDM “supporter” or “supporters” would help an individual with an intellectual disability, known as the “decision-maker,” make key life decisions, including decisions about their care and finances. Most people with developmental disabilities currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.
But persons with severe and profound levels of intellectual disability have greatly diminished decision-making capacities. We think many of those people are likely to be vulnerable to coercion and financial exploitation from persons on their SDM teams who may “help” them make financial decisions that don’t reflect their wishes.
In these situations, family members of persons with developmental disabilities, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who may stand to benefit financially from the clients’ “decisions.”
Legislation still does not provide a standard for judging the decision-making capacity of the individual
In our view, a key piece missing from the SDM legislation so far has been a standard for the level of intellectual disability above which an individual can reasonably be considered to be capable of making decisions with “support” from clinicians, paid caregivers, and other SDM team members.
As was the case with previous versions of the bill, S.109 defines the “decision-maker” as “an adult who seeks to execute, or has executed, a supported decision making agreement with one or more supporters…”
There is no further specification about the decision maker in the bill. There is no differentiation in the definition between individuals with greater or lesser degrees of intellectual disability, and no consideration whether persons with low levels of cognitive functioning are really capable of making and appreciating life-altering decisions.
As a 2013 article on SDM in the Penn State Law Review stated,
…there is a potentially unavoidable paradox in acknowledging that a person has diminished decision-making capacity but maintaining that he or she is nevertheless capable of meaningfully contributing to decision-making discussions and that the decisions that result from such discussions reflect his or her wishes. (my emphasis)
Also, “Supported decision-making” is defined in S.109 as:
…the process of supporting and accommodating the decision-maker, without impeding the self-determination of the decision-maker, in making life decisions, including, but not limited to: (i) decisions related to where the decision-maker wants to live; (ii) the services, supports, financial decisions and medical care the decision-maker wants to receive; (iii) whom the decision-maker wants to live with; and (iv) where the decision-maker wants to work.
There is no specification as to whether the “supporter(s)” would be family members. In other words, family members could be frozen out of the decision-making process if they were consistently outvoted by other supporters.
Bill doesn’t require court approval of an SDM arrangement
Currently, a person applying for guardianship must state in probate court the reason why a guardianship is necessary; and if they are applying for a full guardianship, the reason why a limited guardianship is inappropriate.
There is no requirement in S. 109, however, that the probate court approve an application for an SDM arrangement. However, S.109 would impose an additional burden in probate court on family members who continue to seek guardianship of their loved ones.
Under S. 109, an applicant for guardianship would now have to state in court, “whether alternatives to guardianship … including a supported decision-making agreement, were considered, (and) why such alternatives to guardianship and supports and services are not feasible or would not prevent the need for guardianship” (my emphasis).
Given that applying for guardianship requires probate court approval, it isn’t clear to us why that shouldn’t also be the case with an SDM agreement, which would entail making the same types of life decisions involving an incapacitated individual. Moreover, it isn’t clear why applicants for guardianships should have an additional burden placed on them in court to show why an SDM arrangement, rather than the requested guardianship, isn’t needed.
No clear protection against financial or other exploitation
S.109 states that, “Evidence of undue influence or coercion in the creation or signing of a supported decision-making agreement shall render the supported decision-making agreement invalid.”
This statement in the bill appears to recognize the possibility that a developmentally disabled individual can be influenced or coerced into signing a SDM agreement. The problem with the bill in this regard is there is no description of the type or level of coercion that would invalidate an SDM agreement. Also, the bill doesn’t specify who would invalidate the agreement in that case.
The legislation states that if a person suspects that a disabled individual is being abused or exploited under an SDM arrangement, they can take their complaint to the Disabled Persons Protection Commission (DPPC). But while the DPPC’s enabling statute authorizes the agency to investigate allegations of abuse and neglect, the DPPC is not specifically charged with investigating cases of alleged coercion in signing agreements.
S. 109 also states that the DPPC and the Department of Developmental Services (DDS) may petition the probate court to revoke or suspend a SDM agreement on the grounds of abuse, neglect or exploitation by supporters. But the bill doesn’t say that either the DPPC or DDS will or must petition the court to revoke the SDM agreement even if they do find abuse or neglect. It says only that they “may” petition the court to do so.
No protection against conflicts of interest, and no funding
Members of an individual’s SDM team who are also service providers to that person face a potential conflict of interest when they advise the “decision maker” about making use of the services they provide.
A Syracuse Law Review article published last year about SDM pilot projects in Massachusetts identified, or at least implied, a number of problems or difficulties associated with SDM, including conflicts of interest involving providers.
The Syracuse Law Review article stated that in the Massachusetts pilot project:
…project staff had frank discussions with the Decision Maker and supporters about any potential conflict of interest and how to draft an agreement to minimize the potential conflict, such as having paid supporters not assist with decision-making support for issues that concern services from the agency paying the supporter (my emphasis).
But like bills that have come before it, S.109 does not require any separation between provider employees and individuals on the SDM team. They can serve in both capacities.
The Syracuse Law Review article also stated that one of the lessons of the Massachusetts and other pilot projects was that “without dedicated funding, ample cash reserves or an extraordinary commitment to Supported Decision Making, it is very difficult for organizations to introduce, implement and help to support Supported Decision Making for a large number of individuals.”
There is no reference in S.109, however, to a potential funding mechanism for SDM in Massachusetts.
No dispute resolution process
The Syracuse Law Review article also recognizes that there are likely to be disputes within SDM networks or teams, and noted that a pilot program in New York State created a “Mediation Module designed as a two-day training for mediators.”
While S.109 and previous versions of the bill would require the Executive Office of Health and Human Services in Massachusetts to establish an SDM training program, none of the bills specify or specified either a dispute resolution process for SDM arrangements or training in dispute resolution.
Families may not fully understand the guardianship rights they will be forgoing
SDM advocates argue that the process is entirely voluntary on the part of the intellectually disabled individual, and that family members can still opt to go to court to apply for guardianship.
But it may be wrong in all cases to assume that someone who has a severe or profound level of intellectual disability has not been coerced into making what may look on the surface like a voluntary decision. Also, while a family member may still go to court to become a guardian, the SDM legislation, as noted, would increase the burden on them to make the case for guardianship.
And while family members might be persuaded to willingly enter into SDM agreements rather than to seek guardianship of their loved ones, we think many family members may not realize the amount of authority they would be ceding in doing so. Under an SDM arrangement, a family member would become just one member of the SDM team.
It has been our experience, that in many disputes over care, family members find themselves pitted against a united front of provider and DDS personnel. This would seem to be a highly likely dynamic in an SDM arrangement.
Unless and until the proponents of this legislation finally agree to address these issues and improve the bill, we can’t support it.
DDS finally agrees to allow client to stay with shared-living caregiver; but caregiver’s payment will be cut almost 50%
A year after having disenrolled Mercy Mezzanotti from her shared-living program, the Department of Developmental Services (DDS) finally agreed this past spring to allow Mercy to continue to receive shared-living services from her longtime caregiver, Karen Faiola.
But before doing so, the Department’s Worcester area office reassessed Mercy as a candidate for shared-living services, and increased her assessed level of functioning. That move, according to Karen, will cut her previous income for caring for Mercy by close to 50%.
A higher level of functioning implies a lower level of needed services. However, both Karen and Mercy contend that Mercy’s needs and level of functioning have not changed. Mercy was found by DDS in 2004 to qualify to receive Home and Community Based (HCBS) as well as institutional services from DDS.
“They are continuing to punish us,” said Karen, referring to the DDS area office. Karen and Mercy claim both DDS and Venture Community Services, Karen’s former shared-living contract agency, retaliated against them after they alleged that Venture employees abused Mercy emotionally last year.
Karen Faiola and Mercy Mezzanotti
As we argue below, it also appears that the DDS reassessment of Mercy did not comply with departmental regulations. The regulations require that such an assessment be done by a qualified eligibility team and that notice of the reassessment be provided to Mercy.
Income for caring for Mercy would decline from $38,000 a year to $20,000
Karen said she was told last month by Mercy’s new shared-living contract agency that as a result of the new assessment by DDS, her previous annual income for caring for Mercy will be reduced from $34,000, which she had earned under the Venture contract, to roughly $20,000. Also, she will no longer receive a $4,000 respite allocation for providing services.
Both Karen and Mercy contend the DDS Area Office has deliberately sought to reduce Karen’s pay as part of a continuing vendetta against them for having complained last year that two employees of Venture had emotionally abused Mercy. Karen said the pay cut will it very difficult for her to continue to care for Mercy and to survive financially.
Contract termination followed by involuntary removal from home and disenrollment from program
Mercy has been living in Karen’s Sutton home for the past five years. Karen had been Mercy’s paid shared-living caregiver from 2018 until Venture terminated its contract with Karen in May 2022 without providing a stated reason for the termination. DDS pays corporate providers such as Venture to contract directly with shared-living caregivers.
Prior to the contract termination, Mercy and Karen had complained to Venture that a Venture job coach and a second Venture employee had emotionally abused Mercy.
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 her with another caregiver in Worcester 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 HCBS program. DDS argued that in leaving the stranger’s home, Mercy was refusing DDS services.
Meanwhile, both Karen and Mercy’s therapist filed complaints with the Disabled Persons Protection Commission (DPPC) of abuse of Mercy by Venture. However, a subsequent review by DDS did not result in any findings concerning those charges, indicating that the charges were not investigated.
In July 2022, Mercy appealed her disenrollment to DDS. In February of this year, a DDS-appointed hearing officer upheld the disenrollment, but left the door open for Mercy to “work with” the DDS area office to reapply for shared-living services.
Melanie Cruz, Mercy’s service coordinator supervisor in the DDS Worcester area office, subsequently told Mercy she would refer her to a new shared-living contract agency. But Cruz then texted Mercy in March to say she would have to undergo an eligibility “reprioritization” before she could be “considered for residential services.”
By that time, Mercy had been without a shared living program for more than a year after Venture’s termination of Karen’s contract. Mercy has nevertheless continued to live with Karen, who continued to provide shared-living services to her without financial compensation.
DDS regulations appear to have been violated: No eligibility team and no notice
DDS regulations (115 CMR 6.02(3)) require that eligibility for DDS services be determined by “regional eligibility teams,” each of which must be comprised of a licensed doctoral level psychologist, a social worker with a master’s degree, and a “Department eligibility specialist.”
Karen said the eligibility reassessment of Mercy was carried out in April by Cruz, the service coordinator supervisor, who is employed by the Area Office. In an email I sent on Tuesday to DDS Commissioner Jane Ryder, I stated that having Cruz undertake the reassessment, on its face, does not appear to comply with the regulations.
In addition, the regulations (115 CMR 6.03 and 6.08) state that after completion of an eligibility determination or redetermination, the regional eligibility team must notify the individual of the determination and their right to appeal within 30 days after receiving the notice.
However, Karen said that as of today (August 4) Mercy still had not received a notice of the reassessment. On Tuesday, Mercy texted Cruz, asking for a copy of the reassessment. But Mercy has not received a response from her, Karen said.
Cruz had previously testified against Mercy
In questioning Cruz’s rationale for reassessing Mercy’s level of functioning, Karen also noted that Cruz had previously testified in favor of Mercy’s disenrollment in a November 2022 DDS hearing on Mercy’s appeal. Karen said she believes Cruz was therefore facing a conflict of interest in subsequently reassessing Mercy for shared-living services.
Reassessment reportedly states that Mercy was without services for the past year
Karen was informed that one of the reasons cited by Cruz for the increase in Mercy’s level of functioning was that Mercy was living “unsupported for the past year.” If that statement is actually contained in Cruz’s reassessment, it is untrue. Karen, in fact, continued to support Mercy over the past year. The only difference between that period and the period prior to it is that Karen was not paid over the past year for caring for Mercy.
It appears that the DDS area office has mishandled this case from the start and has carried out what appears to be a vendetta against Mercy and Karen for having reported the alleged abuse against Mercy.
At the very least, we think, a properly constituted regional eligibility team that is independent of the DDS Worcester area office should assess Mercy’s functional level for shared-living services. DDS should then approve a realistic payment schedule to Karen for providing those services.
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.
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.
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.
COFAR blog 