Archive
Parents battle housing complex over effect of second-hand smoke on their disabled child
For more than a month, Nicole and Cang Duong smelled cigarette smoke in the ventilation ducts in their apartment in a housing complex in Kingston.
They were concerned about it mainly because their 3-year-old son Caleb has Down Syndrome and severe obstructive sleep apnea. Cigarette smoke is particularly dangerous to his health.
On May 24, Caleb needed three major surgeries – tubes inserted in his ears, and his tonsils and adenoids extracted. The cigarette smoke odor was evident while he was back home recovering, Nicole said.
Nicole, Caleb, and Cang Duong.
Nicole said that while the housing complex management did subsequently inspect the ventilation system in their apartment and placed filters in the air ducts in response to their concerns, the management never sent anyone to their unit to investigate the origin of the alleged cigarette smoke. Yet, the complex has a strict no-smoking policy that applies to all areas, inside and outside.
In fact, the management suggested that the Duongs themselves should move out of the complex. The Duongs believe this is a violation of federal and state fair housing laws, which forbid discrimination against persons with disabilities.
Housing discrimination includes failing or refusing to make reasonable accommodations for tenants with disabilities, according to the Massachusetts government website.
Cigarette smoke believed to be coming from unit above
The Duongs moved into the Alexan Kingston housing complex on March 18. Their apartment is classified as an affordable rental unit.
Nicole said new people moved into the unit directly above them on May 13. She said almost immediately, she and her husband began to smell cigarette smoke in their bedroom and then in the living room. Then their oldest son, Joseph, who is 19, smelled it in his bedroom.
Nicole said that on May 13, she first texted the management about the smoke odor. On May 16, after some initial correspondence, the management sent a text to the Duongs suggesting they consider moving out of the complex:
Based on the information and concerns you just provided…we are concerned that maybe the Alexan Kingston (housing complex) may not be the best residence for you and your family. We are happy to discuss a lease-break option with you if you decide our apartment community does not meet the needs of your family.
On May 23, Nicole responded in an email to the management, stating that they did not intend to leave the complex, but that they wanted an immediate transfer to another unit within the complex. She stated that in the meantime, she was requesting that the air ducts in their unit be cleaned. That was the day that she and her husband took Caleb to the hospital for the surgeries.
Caleb playing at home.
On May 26, the management did send a maintenance man to inspect the apartment’s air ducts. He found there were no filters in those ducts, and installed some. This was the day after Caleb had come home from the hospital.
At the end of June, Nicole said, the management transferred the upstairs occupants to another apartment in the complex for unspecified reasons. The smoke odor is now gone. But Nicole said she and her husband remain concerned that the problem could happen again.
Contradictory messages from management and attorney
Nicole said that after she requested the transfer to another unit, Jefferey Turk, the management’s attorney, asserted in a June 7 letter to the Duongs that they had failed “to provide any basis for the request to transfer (to another apartment in the housing complex). Your email does not identify any reason you require a transfer or any nexus between any conditions which your son may have and his need to reside elsewhere on the property. As such, until we receive such information, the request cannot be granted.”
At the same time, Turk’s letter seemed to contradict that statement. Its final paragraph started:
Notwithstanding the foregoing, and in an attempt to resolve this matter, my client is willing to offer you a transfer to the next available apartment which is assigned to the affordable housing program and for which you qualify. You will be responsible to move yourself to that new apartment when it is available.
Nicole said that on June 28, another attorney with the management’s law firm texted her, also saying the Duongs would be allowed to transfer to another apartment in the complex. But the attorney stated that in order to do so, the Duongs would have to pay “prorated rent” for the new unit in addition to the full monthly rent on their current unit.
Nicole said she and her husband rejected that offer because it would amount to paying up to half a month of rent for the new unit as of the move-in date, plus the full month for their current unit. She said they are hopeful, for the moment, that they will not need to transfer because the upstairs tenants, who apparently created the odor problem, are no longer there.
Management attorney’s letter appeared to ignore Duongs’ evidence
Turk also maintained in his June 7 letter that the Duongs had not demonstrated that their son is actually disabled. Yet Nicole said they had fully documented their son’s disabilities. Nicole forwarded to us a letter from the state Department of Developmental Services (DDS), which she said she had sent to Turk and to the management. The DDS letter, which was dated June 2, stated that Caleb had met the Department’s eligibility criteria for services to children under five years old.
Also, the Duongs noted that Turk’s June 7 letter itself referred to a report the Duongs had provided him from Quincy Pediatric Associates. That report stated that Caleb had been diagnosed with Trisomy 21, a genetic condition that causes Down Syndrome. The pediatric report also stated that Caleb had been diagnosed with severe obstructive sleep apnea.
Caleb in the ICU after his surgeries in May.
Noise problem
Nicole said there also was a noise problem from the unit above, which disturbed Caleb. He woke up crying one night due to loud, continuous banging or stomping from that apartment. The noise continued from that Friday through Sunday night, and periodically after that.
Nicole said no one from the management office ever came to their apartment to investigate either for the smoke or noise.
No outside investigation
The Duongs said they were unsuccessful in getting any outside authorities to investigate the alleged cigarette smoke odor. The federal Department of Housing and Urban Development (HUD), which manages their affordable rent application, took preliminary information from them about the cigarette odor. But the federal agency closed out the case after 30 days, also without anyone having visited their apartment, Nicole said.
We have written to the management company to urge them to fully investigate complaints from residents such as the Duongs. It is unfortunate that rather than doing such an investigation, the management simply implied that the Duongs should consider leaving. Moreover, we requested that if the Duongs do request a transfer to another apartment, the management should not add an excessive “prorated” rental charge on the new unit.
It is disappointing that both management entities and oversight agencies, such as HUD, which are entrusted with providing housing to persons, many of whom have disabilities, often appear to be indifferent to the wellbeing of the people living in their residential facilities.
DDS wrongly claims federal law does not give individuals the choice of either the Wrentham or Hogan Centers
In a June 5 legal brief, the Department of Developmental Services (DDS) argues that federal law does not give persons with intellectual or developmental disabilities (I/DD) the right to placement at either the Wrentham Developmental Center or the Hogan Regional Center.
We think the Department’s argument in the brief misrepresents federal law, and reflects an unfounded bias among policy makers in Massachusetts against Intermediate Care Facilities (ICFs). The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.
As we argue below, we also think the DDS brief wrongly assumes that group homes necessarily provide their residents with more integration with the surrounding community than do ICFs. That assumption is based on an outdated perception of the way ICFs operate today, and an overly rosy perception of the community-based system.
As we have reported, a succession of administrations has allowed the residential population or census at the Wrentham and Hogan centers to decline. This decline is due to DDS’s apparent policies of denying admission to the ICFs to most persons who ask for it, and failing to inform persons looking for placements that those facilities exist as residential options.
The DDS brief appears to confirm those policies in stating that:
DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.
The DDS legal brief was submitted in response to an appeal to the Department, which was filed by the mother of a man with I/DD who was denied admission to the Wrentham Center. We are withholding the names of the mother and her son, at the mother’s request.
Federal Medicaid law requires a choice of either an ICF or “waiver services”
In our view, the DDS policies regarding admissions to ICFs do not comply with the federal Medicaid law and regulations. Those rules require that ICFs be offered as a choice to all persons whose intellectual disability makes them eligible for care under the Medicaid Home and Community-based Services (HCBS) waiver program.
Persons who are found to be eligible for HCBS waiver care have been found to meet the eligibility requirements for ICF-level care.
The HCBS waiver was established to allow states to develop group homes as alternatives to institutional care. However, the Medicaid statute did not abolish institutional or ICF care. In fact, the statute states that if a state does include ICFs in its “State Medicaid Plan,” as Massachusetts does, the state must provide that:
…all individuals wishing to make application for medical assistance under the (state) plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals. [42 U.S.C. § 1396a(a)(8)]
Federal Medicaid regulations state explicitly that individuals seeking care, and their families and guardians, should be “given the choice of either institutional or home and community-based services. [42 C.F.R. § 441.302(d)] (My emphasis.)
The DDS brief, therefore, wrongly asserts that, “Federal law does not entitle the Appellant (the mother’s son) to admission to an Intermediate Care Facility.”
DDS brief wrongly assumes ICF settings are necessarily more restrictive than community-based group homes
The DDS brief also states, as a reason for denying admission to the Wrentham Center to the mother’s son in this case, that state regulations require the Department to place individuals “in the least restrictive and most community integrated setting possible.” According to the brief, the son currently lives in “a less restrictive community-based setting” than he would in an ICF such as the Wrentham Center.
But a statement that a community-based setting is necessarily less restrictive than an ICF is an ideological position that ignores the evidence.
This past Sunday, for example, I attended an annual birthday party for a DDS client who lives in a provider-run group home in Northborough. The home is located on a busy road. There is no sidewalk along the road, and only one other home in the area is faintly visible from the client’s residence.
There is no opportunity for the client to walk in the neighborhood around the residence, whereas residents at the Hogan and Wrentham Centers have access to acres of walking and recreational areas on the facility campuses.
While staff in the client’s Northborough group home do take him on trips to restaurants and other community events, those kinds of events are also provided, as our Board member Mitchell Sikora has recently described, to residents of the Wrentham and the Hogan Centers.
We’ve also written many times about restrictions imposed by DDS on visits and other types of contact by family members with residents of provider-run group homes.
The presumption that ICFs are necessarily more restrictive than group homes is based on an outdated characterization of facilities such as the Wrentham and Hogan Centers. Like many proponents of the privatization of DDS services, DDS chooses not to recognize the major improvements in congregate care and conditions that occurred, starting in the 1980s, in Massachusetts and other states as a result of both federal litigation and standards imposed by the Medicate statute.
DDS brief takes a we-know-best position
In addition to the questionable assumption it makes with regard to the level of restrictiveness of ICF care, the DDS brief also appears to accept, without question, that care and conditions in provider-run group homes are uniformly good.
The brief noted, for instance, that a DDS regional director had testified during a hearing in the case that the mother’s son “would not likely receive a greater benefit from admission to the ICF than he receives in the community.”
According to the brief, the son:
…has been successfully supported in the community for 13 years, his annual ISP (Individual Support Plan) assessments indicate that he continues to make progress toward his ISP goals, and he is well served by his community-based services and supports.
Conditions are not better in the community
Again, the DDS statements about what is best for an individual appear to be based on an ideological position that community-based placement options are always appropriate and available. In this case, however, the mother had sought to place her son at the Wrentham Center only after his group home provider had stated its intention to evict him from the residence.
The mother told us that in a meeting last year with DDS and provider officials, a provider manager cited two reasons for moving to evict her son. One was that her son had had a toileting accident on the deck of the group home, and that the mother had allegedly failed to notify the staff of the accident. The mother said the second reason was that she had posted a message on Facebook that was allegedly critical of the group home staff.
With regard to the toileting accident, the mother said she had taken her son back to the house after a planned outing, and that her son had the accident because the home was locked at the time and no one was there to let him in. Her son has Crohn’s Disease. The mother also said her son had also been physically abused on at least two occasions at the provider’s day habilitation facility.
Meanwhile, corporate group home and day program providers themselves in Massachusetts acknowledge that care and conditions in the DDS community-based system have been getting steadily worse.
In our view, all of this calls into question DDS’s assertion in the brief that the son in this case has been “successfully supported in the community for 13 years.”
DDS misrepresents the Olmstead Supreme Court decision
Finally, the DDS brief employs a common misrepresentation of the U.S. Supreme Court’s 1999 Olmstead v. L.C. decision with regard to institutional care. The brief wrongly implies that the Court held that in all cases, individuals should be placed in community-based rather than institutional settings. In fact, the Court held in Olmstead that three conditions must be met in order for persons to be placed in community-based care:
- The State’s treatment professionals determine that community-based placement is appropriate,
- The “affected persons” do not oppose such placement, and
- The community placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
The DDS brief, in arguing that Olmstead does not support the placement of the woman’s son at the Wrentham Center, cited only the first of the three conditions above. But all three conditions must hold under Olmstead in order to justify a placement in the community; and, clearly, the second condition doesn’t hold in this case — the affected persons do oppose continued placement in the community-based system.
In sum, the DDS closing brief in this case appears to provide the clearest indication we’ve seen of DDS’s reasoning and its policies with regard to admissions to the remaining ICFs in Massachusetts. It is clear to us that that reasoning and those policies are based on misinterpretations both of federal law and the history of congregate care for persons with I/DD in this state.
Unless the case can be made to key legislators and policy makers in Massachusetts that all family members and guardians should have the right to choose ICFs as residential options for their loved ones, the Wrentham and Hogan Centers will eventually be closed. If that happens, yet another critical piece of the fabric of care for many of the most vulnerable people in this state will be lost.
Retired Superior and Appeals Court judge writes about the care his brother receives at the Wrentham Developmental Center
[Editor’s Note: As we have previously reported, the number of residents remaining at the Wrentham Developmental Center and the Hogan Regional Center has continued to drop. As a result, these remaining, vitally important Intermediate Care Facilities (ICFs) in Massachusetts will eventually close if that decline is allowed to continue.
Mitchell Sikora, a member of COFAR’s Board of Directors, wrote the essay below about the importance of the Wrentham Center to his brother Stephen and himself, and submitted it to a member of U.S. Senator Ed Markey’s staff. We met last week on Zoom with one of the senator’s staff members to discuss our concerns about the future of the ICFs.
Mitch, 78, is a Massachusetts attorney and served as an assistant state attorney general for seven years; a private legal practitioner for 17 years; a justice of the Massachusetts Superior Court for 10 years; and a justice of the Massachusetts Appeals Court for 8 years. Since reaching the mandatory retirement at age 70, he has served as a voluntary mediator in the Superior Court.
Mitch and Stephen Sikora
We think Mitch’s account of the care that his brother receives at the Wrentham Center offers a clear explanation as to why ICFs are so important, and why eliminating those facilities as an option for care will be disastrous in Massachusetts.
It costs money to provide all of the specialists at Wrentham who care for Stephen and his fellow residents. But as we have seen, the closures of four of the six remaining ICFs in Massachusetts since 2012 has not resulted in a promised savings to the state. Over the past decade, the corporate provider-run group home line item in the state budget has grown from $760 million to $1.6 billion.
Moreover, We think Mitch’s list of recreational activities, both on-and-off-campus, that are provided to the residents at Wrentham debunks the myth that congregate-care facilities such as this one are institutional in character and warehouse or segregate those clients.]
My experience with ICFs in Massachusetts
By Mitchell Sikora
I am writing to report my experience with, and my support of, the continued operation of the remaining two ICFs for developmentally disabled residents of the commonwealth: the Wrentham Developmental Center in southeastern Massachusetts and the Hogan Regional Center in northeastern Massachusetts.
My younger brother Stephen, now 72 years old, has lived since age 10 at the Wrentham facility. The Center (originally named the Wrentham State School) has provided him with protection, care, affection, and community, especially since the major upgrade of all of the then Massachusetts state schools by federal district court litigation in the 1970s and 1980s, known collectively as the Ricci case and consent decree.
Since then, the Wrentham Center has functioned effectively as a campus village of concentrated human and physical resources benefitting Stephen enormously as he has aged.
I will do my best to describe the Wrentham Center’s human resources, its physical resources, and its communal benefits.
Human resources
The following personnel are assigned at the Wrentham Center to Stephen and each resident. A medical doctor oversees his health status. A nurse practitioner examines him promptly for any symptoms of illness. A daily staff nurse administers his medications and monitors his appearance.
His assigned social worker regularly visits him in his cottage dormitory and in socialization classes, and communicates her observations to us (his brother and sister).
A physical education specialist provides him with exercise at the Center’s gymnasium and swimming pool. A physical therapist has treated him for multiple orthopedic problems over the last 20 years, including knee replacements from arthritis, and hip and pelvic fractures from falls.
Vocational instructors have trained him to perform (to his own satisfaction) simple useful on-campus work, such as the collection and delivery of recyclable papers and objects. A recreational therapist periodically takes him for off-campus trips and treats, such as a stop at MacDonald’s. A psychologist responds to any episodes of behavioral or mood problems. A nutritionist watches his diet.
The Center also supports a “service specialist” program in which retired employees contract with families to take residents for off-campus rides or on trips to the families’ homes. Typically, the service specialists are familiar with the resident from years of work at the Center. With the fading of the COVID pandemic, the service specialist process can now resume.
Once each year, the Center must conduct a conference with each family to maintain and update the resident’s ongoing Individual Service Plan (ISP). The continuous Plan describes the resident’s health, activities, progress, problems, goals, needs, and spending objectives for the past and oncoming year. The Plan typically approximates 25 pages. The majority of the personnel enumerated above participate directly in the Conference (conducted by Zoom during the pandemic years) or contribute to the Plan.
As a final word about human resources, I should add that over the past 20 years, the Wrentham Center has received the dedicated service of three longtime facility directors and the involvement of devoted members of the Wrentham Family Association.
Physical resources
The Wrentham Center occupies a campus landscape of approximately 20 square blocks surrounded largely by open fields. The grounds include walking paths and picnic tables. The residents live in large cottages or small dormitories, each with a capacity of six to ten occupants.
Each resident has his or her own room. The communal bathrooms (with advanced shower facilities), kitchen, dining, and TV rooms are large and clean. Direct care workers are present at all times.
The campus contains a freestanding health care facility, the May Clinic, comprised of about 10 beds, three or four fulltime nurses, and visiting physicians. The Tufts Dental School maintains an office in the clinic.
The Wrentham Center has standing relationships with a number of hospitals, including New England Baptist for orthopedic care, and Brigham and Women’s Hospital, Sturdy Memorial Hospital, and Norwood Hospital for urgent and general care.
The campus buildings include a modern school structure of classrooms and meeting rooms; a gymnasium; a swimming pool; a canteen/snack bar; and two administrative buildings. Eight to 10 pre-1980s brick dormitories now long-abandoned remain scattered across the campus. The general setting is expansive and tranquil.
Communal benefits
A number of activities get the residents up and out of the cottage or dormitory:
- Physical ed classes at the gymnasium and pool. Classes at the school building in adult education, vocational education, and speaking skills.
- Day trips off campus to recreational parks, sports events, and the inevitable snack shops.
- The campus-wide Christmas decorations and party.
- A campus-wide spring celebration.
- A late summer week long country fair on campus conducted by a professional amusement company.
- Summer vacations of 3 or 4 days off campus conducted by staff and financed by families able to do so, or by the Center.
- The above mentioned service specialist program.
In all these activities the continuity and affection of the Center’s employees play a crucial role. Some of my brother’s caregivers have known and served him for more than 30 years.
My apologies for the length and detail of this message. I hope that it demonstrates the role of a well functioning ICF as a healthy community and home for its residents. It can serve as a unique concentration of both professional competence and elemental compassion.
A while back an old adage made a comeback: “It takes a village to raise a child.” I have thought that it applies even more so to the care of the developmentally disabled. At the very least, the families of the disabled deserve the informed choice of placement of their member in a well functioning ICF.
Since the great upgrade of the ICF system in the 1980s, the state has progressively reduced information made available to the public about the availability of the ICFs so that now only two ICFs remain in operation in Massachusetts. Those two facilities are subject to declining enrollment.
Post-Ricci administrations appear to retain a pre-Ricci vision of the care and conditions in the ICFs. That approach appears to have become dogmatic policy. It seems to me wrong upon several grounds. First, it is factually inaccurate and outdated. Second, it deprives applicant families of the opportunity of an informed placement choice. Third, it appears to violate requirements of both federal and state law that individuals and their families and guardians be able to make informed decisions about all available placements.
The federal Medicaid law and regulations require that individuals determined to be likely to need ICF-level care be informed of “the feasible alternatives” to that care, but also “given the choice of either institutional or home and community-based services.” [42 U.S.C.§ 1396n, and 42 C.F.R. § 441.302(d)].
However, as COFAR has often reported, families and guardians are generally not informed of the existence of the Wrentham or Hogan Centers. As such, those families and guardians are not being given the information or choices specified by the federal requirements.
Similarly, the Massachusetts Department of Developmental Services (DDS) regulations call for “informed consent” for admission to any departmental facility, including an ICF or group home. [115 CMR 3.04.] I suspect that additional sources of law and context would fortify the inherently fair and rational standard of informed consent and choice.
Faithful compliance with the legal standard of informed choice requires DDS to provide a family in need of a placement with a clear and explicit description of the ICFs and their resources and activities, and, if requested, with visiting tours of those facilities.
I hope that these thoughts are useful. Please do not hesitate to contact me for more information. Email: mitchsikora@gmail.com.
Father points out the personal impact of our neglect of adequate wages for caregivers
While the state provides almost $2 billion a year to privately run corporations to deliver a wide range of services to people with developmental disabilities, policy makers and legislators have historically been reluctant to fund even small increases in wages to actual caregivers.
In the case of parents of children with disabilities, the state provides no financial remuneration at all. At least one of those parents would like to see that changed.
We’ve written before about John Summers and his efforts to care for his non-speaking, autistic son Misha. In an opinion piece in The Boston Globe on May 18, Summers talks about the difficulty he has had in finding Personal Care Attendants (PCAs) to come to his home to help him provide daily care to Misha.
That difficulty Summers is facing is due to an ongoing staffing shortage that has afflicted virtually every facet of the state’s human services system since the start of the COVID pandemic some three years ago.
But there’s more to it than the lack of available staff. Summers, as a caregiver himself to his disabled son, receives no financial help from the state to do that work even though caring for Misha required him to leave his job and has dropped his income below the poverty line.
We have on many occasions called for adequate wages, benefits, and training for direct caregivers in the provider-run group home system funded by the Department of Developmental Services (DDS). The same neglect of the caregiver role exists when it comes to the funding of services to people living in their private homes, which is ostensibly where the state wants disabled people to live.
As Summers notes, “the concept (of PCA services) reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care.” Yet Summers contends the system as practiced today “cheats “ caregivers like himself.
Parents should be paid as caregivers
MassHealth allows consumers to hire just about anyone they want, including friends and relatives, to provide personal care services to themselves or others in their homes. But so-called “legally responsible relatives,” particularly parents, are barred from receiving state funding for caregiving.
As Summers points out in his article in the Globe, payment to legally responsible relatives is prohibited by the federal Medicaid law. But the state’s Home and Community Based Services (HCBS) waiver allows for the development of state programs that don’t meet specified Medicaid requirements. Payment of parents as caregivers is one such practice that can be permitted under the waiver. So far, however, MassHealth has not sought such permission from the federal government.
According to Summers, state legislators have filed bills since 2015 to allow legally responsible relatives and guardians to be paid for caregiving services. One such bill, S.775, is now before the Legislature’s Health Care Financing Committee.
Governor Healey, however, could act as well to seek such a waiver. Given the ongoing staffing shortage among PCAs and other caregivers, it would make a lot of sense to do so.
Governor labels PCA staffing shortage a priority
Summers points out that Governor Healey has pledged to place the “crisis-level” staffing shortages in the MassHealth Personal Care Attendant Program at the “top of her list.”
It is currently unknown, however, how many of the tens of thousands of persons who are enrolled in the state’s PCA program aren’t receiving PCA assistance due to the staffing shortages. The Healey administration needs to get a handle on that number for a number of reasons.
State funding for PCAs unspent
Summers, for instance, provided us with data he received from MassHealth on May 23, after he had filed a Public Records request for it. The data show the state appropriated more than $432 million in funding for personal care attendant services between 2012 and 2022 that was never spent, apparently because of a lack of available PCAs.
There is a keen irony here. More PCAs would become available if they were paid a living wage for their work. Instead, they are paid just $18 an hour, pursuant to a recent collective bargaining agreement.
The irony is that the $432 million in unspent funds implies there is enough money to boost the pay of caregivers in the human services system. While we have called for a raise to $25 an hour, Summers has suggested $50. So far, no one seems to have information on how much money is available or actually needed to fully address the direct-care wage problem.
Bureaucratic, privatized structure
What the state has done has been to perpetuate a privatized bureaucracy to administer the PCA program, just as it has built a largely privatized group home system funded by DDS. Summers believes the bureaucratic hurdles that the state has imposed have further discouraged people from applying to become PCAs and have led many to leave that profession.
As Summers points out, PCAs are paid though Tempus Unlimited, Inc., a private “fiscal intermediary.” Those workers will soon have to submit to a potentially intrusive process called Electronic Visit Verification, which is administered by Optum, another private firm.
It seems the state and federal governments are using the Electronic Visit Verification system to target PCAs for potential fraud. But are individual PCAs really committing most of that fraud, or does PCA fraud primarily take the form of improper billing by managers of the PCA provider companies? As usual, the direct care workers get few of the benefits of the system in which they work, but incur most of the blame. It’s apparently good politics.
Misplaced priorities
In sum, it appears the state has over-funded the PCA line item each year for the past 10 years, apparently due to continuing staffing shortages. Yet, the state could have used that funding each year to raise the hourly wages of the PCAs, which might have helped solve the staffing shortage problem.
There is also clearly more than enough funding available to pay parents such as Summers to enable them to care for their disabled children so that those parents are not forced into poverty.
It is not clear that the state has a handle on the extent of the PCA staffing shortage either or on the extent of potential fraud in the system. Yet, the state has created a privatized, bureaucratic administrative process for its PCA program that appears intended to inconvenience and place the blame on the very people who are the key to making the system work – the parents and caregivers.
We hope that in placing the PCA problems at the top of her list, Governor Healey will recognize and work to correct these misplaced priorities.
After being cleared of abuse, mother continues to face restrictions in contact with her son
More than a year after the state rescinded an abuse charge against Christine Davidson for allegedly having given her son too much Tylenol and cough syrup during a weekend visit home, the Department of Developmental Services (DDS) is continuing to restrict her contact with her son, she says.
Christine said DDS officials and managers of the corporate provider running her son John’s group home in Waltham are continuing to restrict the amount of time on weekends that John can come home to visit her.
Christine’s case appears to fit a pattern in which DDS and its providers have placed restrictions or bans on family contact with loved ones in the DDS system for questionable reasons. (See here, here, here, and here.)
Christine said she has been told by two of the managers of the corporate provider, WCI, Inc., that “it depends on how I behave” as to whether John can stay home with her for more than one night on weekends. She said the implication is that she can’t be trusted in caring for her son, particularly in giving medications to him.
Christine Davidson and her son John
Christine said the continuing lack of trust in her appears to stem from an abuse allegation against her, which the state Disabled Persons Protection Commission (DPPC) had initially determined was “substantiated.” The agency later reversed that determination.
Christine faced the abuse charge after she was unable to wake John up in the morning of June 21, 2021. She called 911 that morning, and John was brought to the Newton Wellesley Hospital emergency room. He quickly recovered after being given oxygen.
In an investigative report issued in October 2021, the DPPC concluded that John’s hypoxemia or low oxygen level had likely been caused by Christine because she had allegedly given him an “undetermined” amount of cough syrup and Tylenol that weekend, and had failed to have him use a prescribed breathing assistance machine at night.
COFAR examined the DPPC’s investigative report and reported in January 2022 that the Tylenol and cough syrup with codeine that Christine had provided her son had been prescribed by his primary care doctor, and that there was no evidence presented by the DPPC that she did not follow the prescriptions. COFAR also noted that the group home had, at the time, failed to deliver the required nighttime breathing equipment for John to Christine’s home or to train her in how to use it.
Christine was represented in appealing the abuse substantiation by Thomas J. Frain, COFAR’s president, who is an attorney.
Following the initial substantiation of the abuse charge in October 2021, all visits to Christine’s home by John were suspended, and all of Christine’s visits to the group home were required to be supervised. John was not even allowed to go home to visit Christine on Christmas in 2021.
But in February 2022, the DPPC, in a rare reversal, essentially agreed with COFAR’s findings, and changed the abuse designation from “substantiated” to “unsubstantiated.” In a letter rescinding the abuse charge, a DPPC assistant general counsel stated that he “(did) not find that the conclusions of the (investigative) Report were supported by the weight of the evidence.”
Home subject to cockroach infestation
Christine has, meanwhile, continued to blow the whistle on allegedly poor care and conditions in the group home. Last year, two medical specialists backed up her claims that her son was not receiving needed physical therapy in the residence and was declining physically there. Her allegations about those issues, however, do not appear to have been investigated by the DPPC.
In February of this year, John’s group home was shut down for a month due to a cockroach infestation, leading DDS to order WCI to assess all of its group homes for “any hazards.” During the shutdown, John and four other residents were relocated to a hotel in Woburn.
Christine said that both she and her son had repeatedly complained to WCI in previous months about the roaches and about other allegedly unhygienic conditions in the residence.
Blame placed on Christine
Christine said John’s clinical team, which includes DDS and provider employees, has continued to treat her as if she is not responsible enough to care for her son without continuing restrictions and supervision.
Christine said that after the group home was reopened in March following the insect infestation, the clinical team permitted John to stay overnight at her home only on one night each weekend. She said the group home staff would drop him off each Saturday at 11 a.m. at her house, and pick him up on Sunday at 7 p.m. Yet, she said, John didn’t want to return to the group home on those Sunday nights.
This past weekend, the clinical team agreed to begin alternating between one-night and two-night weekend visits home for John. But Christine said those decisions have been made without her or John’s input, and that the clinical team does not appear to take John’s preferences into account. The team decisions, she said, “are an insult to John and to me too. I’ve done everything I could for him, all his life.”
Christine said the clinical team decisions are not in writing, but have been conveyed to her by WCI management personnel.
Decisions are made in conjunction with co-guardian
Christine said that while she has no input into the clinical team decisions, a nephew of hers, who was appointed as John’s co-guardian, is regularly consulted in the decision-making process.
Christine said DDS petitioned in probate court in May of 2020 to remove her as her son’s sole guardian after she got into a dispute with the Department over the placement of her son in what was then a new group home.
In a settlement of the matter, Christine was allowed to remain as co-guardian, and her nephew, George Papastrat, who lives in North Carolina, was appointed as John’s second co-guardian, with all medical and residential decision making powers.
Christine said that whenever she requests changes in John’s placement or asks for increased visitation, she is told by DDS that Papastrat must agree to it. But she said she feels she has no influence on Papastrat.
While Christine may not have formal decision-making power under the co-guardianship decree, it is clear that she has her son’s best interests at heart and that she has always fought for adequate care and services for him. It also appears that the clinical team does not fully understand the severity of the problems with care and conditions in the group home.
We think that at a minimum, the members of John’s clinical team should rethink their presumptions regarding Christine’s ability to care for her son, and she should be consulted in all decisions regarding his care. Moreover, there is no reason, as far as we can see, to continue to impose restrictions on Christine’s contact with her son.
Mass Arc echoes our concern that DDS faces ‘systemic failure’ in providing services
Almost two years ago, we first reported that direct care staffing shortages were causing a potentially serious deterioration in residential and day program services in the Department of Developmental Services (DDS) system.
We have also reported repeatedly that the ongoing staffing shortages have caused worsening conditions in the group home system and a lack of meaningful activities in community-based day programs.
Now, the Arc of Massachusetts — an organization that lobbies for DDS residential and day program providers — is echoing our concerns. GBH News, citing the Arc, reported on April 27 that “up to 3,000 Massachusetts residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields.”
The public radio news outlet quoted Maura Sullivan, a senior Mass Arc official, as saying:
There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases. (my emphasis)
We would emphasize that we believe that thousands of Massachusetts residents are waiting not only for day program services, but for residential placements as well. In her remarks, Sullivan did not refer specifically to day program services, but to a lack of services in general.
The resources may be there
What the Arc isn’t saying is that the corporate providers are well funded in the state budget. The provider residential line item will have grown from $847 million, ten years ago, to more than $1.7 billion, under Governor Healey’s Fiscal Year 2024 budget proposal.
We think there is sufficient funding in the DDS system to provide needed services. It’s just that DDS isn’t using the resources in an optimal way. An example of that is DDS’s neglect of the ICFs and state-operated group homes as potential resources.
We have suggested to families whose loved ones are either receiving substandard services or are waiting for services that they ask DDS for placements in either the state-run Wrentham or Hogan ICFs, or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
While the state has continued to pour money into the corporate provider system, the number of residents in the state’s state-operated group homes and state-run ICFs have continued to drop.
As of the fall of 2021, we heard that state-operated group homes were being closed, and last month, we received records from DDS indicating that those closures were the result of insufficient staffing of corporate provider-run group homes. Yet, the records also indicated that the state-operated group homes continued to have vacancies.
Poor pay of direct care workers not the result of a lack of resources
We agree with the Arc that the human services direct care workforce continues to be grossly underpaid, and that this is a primary reason for the continuing staffing shortages.
Where we disagree with the Arc is that it once again doesn’t appear to us that the problem of low pay for direct care workers is necessarily due to a lack of resources.
The increases in state funding to the providers over the past decade have resulted in continuing increases in the pay of the provider executives. The increased state funding, however, hasn’t been passed through by the providers to their direct care employees.
We hope the Healey administration is open to a new approach to this problem. The new administration needs to redirect more of the state’s resources to state-run programs, and needs to ensure that those resources get to those who underpin the entire system — the direct care workers.
Mother gets little response to concerns about care of her disabled son in group home
Early on a Saturday morning last June, Ian Murawski phoned his mother Rachel Surner from his group home in Ashland, where he had been living for about a month.
Ian, 30, has an intellectual disability and has spastic quadriplegia, a condition that has left him with the limited ability to move only his arms. He is a talented singer, however, and Rachel describes him as having “amazing harmonies.”
It was 5:30 in the morning, and Ian said he needed to urinate, but that his bedside urinal was out of his reach. Rachel suggested he ring a bell near his bed, but Ian said the bell had fallen on the floor. She said she advised her son to yell for help.
About 15 or 20 minutes later, Rachel texted Ian asking if he had gotten help. He said “no”; so, at 6:45 a.m., she drove to the Ashland residence from her home about 10 minutes away in Holliston.
Rachel said that as she stood at the front door of the group home, waiting for someone to answer, she could hear Ian yelling inside for help. The home is run by the Justice Resource Institute (JRI), a corporate provider to the Department of Developmental Services (DDS).
Ian and his mother Rachel
After she rang the bell, a staff worker came to the door. She said she explained she was Ian’s mother, and Ian had been calling for help since 5:30.
No answer, just ‘intimidation’
Rachel said the staff worker did not want to let her in, but she brushed past him and walked inside anyway. “At that point, I was going in to help my son and find out why he didn’t have the things he needed or wasn’t getting help.”
She said that when she went into her son’s room, she saw that his urinal, which was supposed to be on his bedside table, was on the floor.
She brought the urinal to her son and tried to leave the room to give him privacy. But she said the staff member was now blocking the door to the bedroom and wouldn’t move to let her out.
When she insisted on being allowed to leave the room, the staff member reluctantly moved slightly to let her out. She said he then asked her to go stand by the front door and stated, “’You can’t just come here, just show up at any time.’”
“I informed him that Ian had been requesting help since 5:30,” Rachel said. “I asked why he was not assisted, but I got no answer, only a demand, intimidation and questions back.” She said the staff member did at one point say he was unaware Ian needed help, “to which I informed him that I could hear him while I was standing at front door!”
All of the details related above were contained in an email that Rachel sent on June 20, two days after the incident, to multiple DDS and JRI officials. She said she received no immediate response from anyone to her email.
On June 28, eight days after Rachel had sent her email, Ian’s then DDS service coordinator, emailed many of the same officials to express concern that JRI was not directly responding to Rachel’s concerns.
“If Ian is in distress in any way, please let us know!” the service coordinator’s email stated. “We would like to be aware so we can talk as a team and see if there are additional supports we can put in place to help… I also think we should hold another larger team meeting just as a check in, to hear Rachel’s observations and see if we can change our approaches moving forward.”
Rachel said the service coordinator later left to work in another DDS area office closer to where he lives.
Problems throughout provider system
Rachel is one of many family members and guardians of DDS clients who have been contacting us in recent months about what appear to be worsening conditions in the Department’s provider-run group home system.
We have suggested to Rachel and many other parents that they ask DDS for new placements for their loved ones in either the state-run Wrentham or Hogan Intermediate Care Facilities (ICFs), or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.
In most of these cases, the care issues we hear about are numerous and interrelated.
Need for intensive care
Ian had encephalitis when he was a baby, which caused brain damage, cognitive delays, and mental health issues, Rachel said. He doesn’t require a ventilator or g-tube or significant drugs other than mental health medications. But he does need intensive physical care.
Rachel said her son can feed himself, but he can’t shower or toilet himself. She said he has been left at times by the staff to sit in his urine and feces.
Rachel said that while Ian has needed periodic psychiatric hospitalizations, she hasn’t been able to get him placed in most psychiatric hospitals because he is quadriplegic and requires too much care. He has been admitted to Mass. General Hospital on occasion, she said, but only when she has brought him directly to the ER “which is often very hard to do during a crisis situation.”
Prior to moving to the group home, Ian had lived at home. From age 10 to 18, he was at the Mass. Hospital School in Canton.
Rachel said Ian requires 1-on-1 care, but he is not getting that in the group home. There are supposed to be two staff members available when he’s at the house, but sometimes there is only one staff there to care for him and one or more other residents. His group home has four residents. The other residents are able-bodied and high functioning.
Last year, Rachel reported to DDS that Ian had bed sores. She said she has not been informed as to whether the Department investigated the matter or issued a report.
She said the group home staff also make mistakes with Ian’s medications. He is on Risperidone, Ativan, and Loxapine, which are used to treat schizophrenia. At times, he seems as if he is over-medicated. He seems “really out of it,” she said.
Accusations by JRI
Rachel said that earlier this month, a staff worker accused her and two family members of going into the group home, yelling, and breaking things. She said she was with Ian’s twin brother and his stepfather, and that at no time were they disruptive. She said she visits the home just about every day. Now, she said, when she and family members visit, they turn on their video cameras to document what is happening.
Rachel said that in a recent meeting with DDS officials, a JRI manager accused her of abusing the staff, and threatened to immediately discharge Ian because of that. She said the DDS officials, who were at the meeting, were caught off guard by this. They later told Rachel they had no record of any complaints about her. But nothing has been resolved, she said.
Lack of toileting
Despite the former service coordinator’s efforts, Rachel said the group home’s failure to attend to Ian’s toileting needs continued in the ensuing months. The incident related above about Ian’s urinal wasn’t the last time he was left without help when needing to use toileting facilities.
In a July 18 email to DDS and JRI officials, Rachel wrote that she had just visited her son and found him in clothing that was soiled with urine and feces. No staff member was available, so she cleaned her son up herself, but couldn’t find a change of clean clothing in his dresser drawers.
Rachel said that when she went looking for the staff, she found them sitting in the living room on their phones. The response she received from the staff was that “a.m. staff had not done laundry and it was washing now.”
“Although there are a few issues here,” Rachel stated in her email, “the biggest is he was sitting in soiled shorts, which he would have been for hours if I hadn’t come and cleaned him up. This is not o.k.”
The problem was not resolved, however. In an October 3 email to DDS and JRI — more than two months later — Rachel said that when she had picked Ian up at the group home the previous Saturday for a family dinner, he was inappropriately dressed in shorts and a t-shirt, and that his shorts were soiled. She and her husband got him cleaned up and “properly dressed.”
When they arrived back at the home at 7 p.m. that evening, there was only one staff member there, Rachel wrote. As with other problems regarding care in the group home, the toileting problem has persisted to the present day, Rachel told us.
Lack of showering
Rachel has also emailed DDS and JRI officials on several occasions to express her concern that Ian has not been regularly showered at the group home. In a July 5 email, she noted that she had noticed over the previous week that Ian had been going for several days at a time without a shower. In one case in which he had accidentally soiled himself, he was not showered afterward, she said.
Rachel added that when she messaged the JRI program manager to request that he ask the staff to shower Ian, she received a reply from the program manager that he was “‘looking for someone to shower him, but no one was around.’”
“This should not be something that goes days on end without happening, nor should it be something I need to ask for,” Rachel stated in the July 5 email. “Personal hygiene is necessary and also imperative in keeping skin clean, healthy and preventing breakdown.”
But the showering problem was not resolved. In the same October 3 email in which she had described the continuing toileting problem, she described a continuing lack of showering.
“Ian, having been soiled and not showered in the previous two days, needed a shower,” Rachel stated in the October 3 email. She said she was going suggest that Ian be given a shower upon arriving back at the goup home after the family dinner that previous Saturday evening. But she said she didn’t suggest it because there was still only one staff member there. She said she spent 45 minutes getting Ian ready for bed because the single staff member was busy with the other residents.
Yet, as of the following Monday morning, October 3, Ian still hadn’t been showered, Rachel said in the email. “Not only is this a violation on the requirements for the house, but Ian needed care and God forbid there were a real emergency!” she wrote.
Ian singing with two musician friends, Chris Fitz and Steve Dineen, at a local venue in Ashland. Rachel first introduced Ian to the duo about seven years ago.
Left in pain
An additional problem that apparently took months for the staff to address was back pain that Ian had regularly suffered from. Emails from last June through September indicate that this problem was not resolved in that period.
In a June 27 email to JRI and DDS officials, Rachel said Ian had been complaining about his back, and thought it might be due to his mattress. She noted, though that the mattress was “a very good Tempur-Pedic mattress and almost identical to the one he has at home.”
Two months later, on August 27, Rachel wrote that Ian’s back pain was continuing. She noted that while his doctor had prescribed Advil, an anti-inflammatory, for the pain, the staff was giving him only small amounts of Tylenol, which wasn’t helping.
She said that when she had tried to reposition Ian in his bed a few days before, he had screamed in pain and said his back was spasming. She immediately asked the staff for Advil for him, but was told none was available.
Yet, when Ian’s stepfather brought Advil to the house the following day, he was told the staff did have Advil.
“At this point, I think he needs to see a doctor, PT and perhaps have a muscle relaxer for when things get as bad as they have,” she wrote.
Three days later, on August 30, Rachel emailed JRI and DDS to say she had spoken with the group home staff the previous evening to ask that Ian be given Advil before bed. This time, she said, she was told there was no order from the JRI administrative office to do so. So, Rachel said she called the office on-call number three times and left messages with no response.
Finally, at 9:30 that night, having not been able to reach anyone in charge, Rachel drove to the Ashland home, and gave Ian Advil. She said he was “grateful” for it.
The following day, Rachel did receive a response to her email from the house manager who apologized that no one had called her back the previous night, adding, “we are working on having this fixed.” The house manager then claimed, however, that Ian “has not been expressing the back pain to the staff at the house the same frequency as he has been expressing it to you.”
But Ian’s pain was persisting. On September 12, Rachel wrote to JRI and DDS officials to say that Ian had been up all night the previous Monday night with back pain, but was sent to his day program the next day exhausted, not feeling well and was still experiencing spasms/pain.”
Rachel said that later in the year, the staff became more consistent in giving Ian Advil for his back pain. But she said she remains concerned that the staff are generally not observant enough to detect when Ian is in pain. He doesn’t always voice it, she said, referring to the house manager’s statement that the staff rely on Ian to do that.
Needs ICF or state-operated group home
It is clear from the email trail in this case that the concerns that Rachel has raised with both DDS and JRI about Ian’s care have not been sufficiently addressed or addressed in a timely manner.
We think that in cases like this, DDS should undertake investigations of the allegations and should be open to, and encourage parents in finding new placements for their loved ones.
In this case, we think Ian would be an excellent candidate for placement at the Wrentham Developmental Center or a state-operated group home. Federal law and regulations give individuals the right to be informed of “all feasible alternatives” for residential placement.
Unfortunately, as we have reported, this is not happening in the DDS system.
DDS reportedly continuing to block shared living services to client who complained of abuse by provider agency employees
Almost a year ago, Mercy Mezzanotti, a client of the Department of Developmental Services (DDS), lost her shared living services after claiming she had been emotionally abused by two employees of Venture Community Services, a DDS-funded provider agency.
Today, Mercy says, DDS is continuing to block her attempts to get her shared living services back.
On Monday (April 10), COFAR emailed DDS Commissioner Jane Ryder, contending that Mercy has been illegally denied shared living services by the DDS Worcester area office since May 2022, and urging Ryder to intervene in the matter.
Mercy is currently living in the Sutton home of Karen Faiola, who is voluntarily providing shared living services to her. Karen had been Mercy’s paid shared living caregiver for four years until Venture terminated its contract with Karen on May 23 without providing a stated reason for the termination. DDS pays corporate providers such as Venture to contract directly with shared living caregivers.
Prior to that May date, both Mercy and Karen had complained that a job coach working for Venture and a second employee had emotionally abused Mercy. As a result of the contract termination, Karen hasn’t been paid since May for continuing to care for Mercy.
Moreover, on the same day that Venture terminated its contract with Karen, a Venture employee removed Mercy against her will from Karen’s home and placed Mercy with another caregiver whom Mercy had never met. When Karen, at Mercy’s insistence, brought Mercy back to her home two days later, DDS moved to disenroll Mercy from its federally reimbursed Home and Community Based Services (HCBS) program. DDS argued that in leaving the stranger’s home, Mercy was refusing DDS services.
Door was left open to reapply
In February, a DDS-appointed hearing officer sided with the Department and upheld Mercy’s disenrollment, but left the door open for Mercy to “work with” the DDS area office to reapply for shared living services. That month, Mercy complied with the hearing officer’s decision by asking for a referral to a new provider payment agency, the Kennedy Donovan Center. Mercy’s hope was that Kennedy Donovan would then agree to her longstanding request that Karen remain as her caregiver.
The DDS area office first appeared to agree to Mercy’s request for a referral to the Kennedy Donovan Center. But then the area office failed without explanation to send the referral. Mercy and Karen said Kennedy Donovan informed them it could not process Mercy’s application for services without a referral from the DDS office.
Mercy’s service coordinator supervisor in the area office then texted Mercy last month to say she would have to undergo an eligibility “reprioritization” before she could be “considered for residential services.” The supervisor declined both to answer Mercy’s question why she was not sending the referral as she had earlier promised to do, and to explain the purpose of the reprioritization.
In our email to Commissioner Ryder on Monday, we stated that “Mercy has been treated with callous cruelty by the DDS Worcester area office, which has acted time and again, without explanation, to thwart her wishes regarding her living arrangements, care and services.”
We noted that the area office first refused to properly investigate Mercy’s allegations that she had previously been emotionally abused by Venture employees and was subsequently emotionally injured by her involuntary removal from Karen’s home.
“Bad-faith argument”
We stated to the commissioner that the area office then argued that because Karen no longer had a contract to provide shared living services to Mercy, Karen was no longer a qualified shared living caregiver.
As a result, according to the area office, Mercy was “refusing DDS services” in continuing to stay with Karen. This was, in our view, “a bad-faith argument that deliberately ignored Mercy’s express wish and desire to continue to live and receive services from Karen.”
As we stated to Ryder, Mercy has tried to comply with the hearing officer’s decision that she should nevertheless work with the DDS area office to find a new Qualified Shared Living Provider agency. Yet, as noted, the area office has continued to refuse to cooperate with Mercy in this regard.
Services needed now
Mercy needs shared living services. If Karen were to stop caring for her without compensation, we are concerned Mercy could well become homeless. Mercy needs to remain as a “First Priority” client as per DDS regulations (115 CMR 6.07).
We maintained to Ryder that Mercy is entitled under the DDS regulations to receive shared living services, and, in our view, has been improperly and illegally denied those services since May 2022. In addition, the DDS area office has acted repeatedly to thwart Mercy’s clearly stated wish and preference to have Karen remain as her shared living caregiver.
As the hearing officer in Mercy’s appeal of her disenrollment stated, Mercy “is eligible for and receives supports from DDS on the basis of her intellectual disability.” (In actuality, Mercy has not received such supports since May 2022.)
We hope that Commissioner Ryder will take action in this matter and right the longstanding wrongs that are being done to both Mercy and Karen.
DDS data imply the state-operated group home system may have vacancies
While Governor Maura Healey has proposed a welcome 11% increase in funding for the Department of Developmental Service’s state-operated group homes in the coming fiscal year, documents we have received from DDS indicate that those residential services remain underutilized.
In January, we asked DDS for its latest data on the census or number of residents in the state-operated group homes and intermediate care facilities (ICFs) in Massachusetts, and for records indicating the reasons why several state-opereated group homes were closed in 2021.
DDS’s latest data and data previously provided to us imply that there have been, and may still be, vacancies in the state-operated group home system despite the apparently permanent closure of a net of six homes in 2021. That raises a question for us as to why the Department does not appear to offer state-operated group homes as an option to persons seeking residential placements in the DDS system.
As we have reported, DDS does not inform people waiting for residential placements of the existence of the state-operated system. In fact, people often tell us that DDS tells them there are no vacancies when they do inquire about state-operated group homes as potential placements for their loved ones.
Records we received last month in response to our January request also indicate that the closures of the state-operated group homes in 2021 were due to existing and projected staffing shortages that were expected to be temporary.
While the documents do not indicate that the closures were part of a strategy to dismantle the state-operated group home system, the records raise a question why only one of the seven homes that were closed that year has subsequently been reopened.
No continuing data on census
In an initial response on January 18 to our Public Records request, DDS said it no longer had data on the census or total number of residents in the state-operated group home system. The Department said it could provide data only on the total capacity of the group homes.
It remains unclear why DDS stopped collecting the census data. Data, which DDS provided to us in 2021, showed a steadily dropping census in the state-operated group homes and ICFs in the state for several years previously.
The declines in the census in those settings implied a departmental strategy of letting the critically important state-operated system die by attrition. Successive administrations have instead funded the continued expansion of a much larger system of group homes in Massachusetts that are run by corporate providers that contract with DDS.
Data indicate possible vacancies in state-operated group homes
The January DDS data showed that the total capacity in the state-operated homes dropped from 1,173 residents in Fiscal 2019 to 1,157 in Fiscal 2021 — a 1.4% drop. That would indicate that some homes were closed prior to 2021. The data, as we’ve reported, also showed a continuing drop in the census at the Wrentham and Hogan developmental centers or ICFs.
As noted, DDS previously provided us with data in 2021 on the census in the state-operated group homes. That previous data shows the census dropped from 1,151 in 2019 to 1,097 in 2021 — a 4.7% drop.
Given that the census in the state-operated group homes dropped by a greater percentage than the capacity of the homes from 2019 to 2021, it appears there were vacancies in the remaining state-operated homes between 2019 and 2021.
In fact, the differences between the census numbers and capacity numbers in those years imply that there were 22 vacancies in the state-operated group home system as of 2019, and 60 vacancies as of 2021. Unfortunately, we won’t be able to do that analysis going forward from 2022 because DDS is no longer keeping records on the census in the group homes.
DDS finally appeared to use its knowledge rather than doing a computer search for the latest documents
In response to our January Public Records Request, DDS had initially conducted computer searches for emails, and was proposing to charge us as much as $22,000 to process them. In two appeals to the state Public Records Division, we suggested DDS should use its knowledge to find the records rather than doing computer searches. It appears DDS finally used that knowledge.
The three documents that DDS provided us last month were letters from two DDS regional directors that concern state-operated group home closures in two DDS regions (Central West and Southeast) during an agreed-upon timeframe of August to November of 2021.
The three letters were from Rick O’Meara, DDS southeast regional director, and Anthony Keane, central west regional director, apparently to families or guardians of group home residents. Two of the letters indicate that the closures were either planned or had occurred due to both insufficient staffing and the expected impact of a new administration policy requiring state employees to be vaccinated for COVID-19. One of the letters, from Keane, referred to an unspecified emergency.
The letters from Keane and O’Meara stated that the closings would be temporary, and that residents would return to reopened homes when the staffing was once again adequate.
DDS should be fully using its state-run group homes
Despite the closures of the state-operated group homes in 2021, the possibility that vacancies exist in the remaining residences is a cause for concern.
Every day, we hear from people who are either not satisified with the care or services their loved ones are receiving in the provider-run residential system, or who can’t get residential services. When they do ask about the availability of state-run group homes or ICFs, they get push-back from the Department.
We hope that the additional funding that Governor Healey has proposed for the state-operated group home system will be used to hire sufficient staff to run the remaining homes in the system at full capacity. DDS should be fully utilizing every available resource to provide adequate care and services to all who want them.
Boston Globe seeking information about restraints, staffing, and community integration in group homes
The Boston Globe is seeking information from families of children and adults who are diagnosed with autism and who are living in group homes. That includes group homes that are associated with special education schools for persons under the age of 22.
Below is the message two reporters from The Globe asked us to convey to our readers:
We are reporters for The Boston Globe, and we are researching group homes that specialize in children and adults diagnosed with autism, including group homes that are part of residential schools. We would like to speak with families about their experiences with these types of group homes, including issues around restraints, staffing, and community integration.
We have extensive experience covering health care, social services and family issues in Massachusetts, and are eager to hear from you. You can reach Liz Kowalczyk at Lizbeth.kowalczyk@globe.com or 617-291-4318, and Stephanie Ebbert at Stephanie.ebbert@globe.com or 617-504-6381. We understand these can be sensitive issues, so if families want to reach out initially without using their names, that is fine too. Many thanks for your help.
We are always ready to offer our help to mainstream media outlets that investigate abuse and neglect of persons with developmental disabilities. We encourage you to contact Liz Kowalczyk or Stephanie Ebbert if you think your loved ones meet the criteria they are describing.
We have explained to the Globe that since the COVID pandemic began, we have seen a three-part crisis accelerating in the Department of Developmental Services group home system:
1. Continuing staffing shortages are resulting in both worsening care and conditions in group homes and a reduction in meaningful activities in community-based day programs.
2. Due to an ideology that promotes privatization, successive administrations in Massachusetts have been phasing out state-run Intermediate Care Facilities (ICFs) and state-operated group homes and have been expanding the state’s corporate provider-run group home network. This has stranded potentially thousands of people who are unable to function in community-based settings or who are unable to access state-run programs.
Meanwhile, the expansion of the provider-run system has been correlated with ever-rising financial compensation of provider executives and continuing low pay of direct-care workers.
3. Family members and guardians who complain about the problems noted above often find themselves marginalized by DDS. They are sometimes banned from contact with their loved ones; and, in some instances, the Department has challenged their guardianships.
If the Globe is able to help us shine a light on any of these issues, it will help lead to better lives for some of the most vulnerable members of our society.
COFAR blog 